Hi, I'm new here, looking for ANY type of help. Our youngest son was diagnosed at 2.5 yrs old with autism. Has health issues, in and out of hospital with a life threatening disorder as well. He has improved his speech/understanding since starting early intervention shortly after diagnosis - OT, two speech therapists, physiotherapy. Went to an autism kindergarten, then pre primary with an aide, and he's now in year 1 with an aide four full days a week. Still struggles a lot. The main concern at the moment is with his eating. He's gotten worse as he's gotten older - has stopped eating some of the foods he used to, has lot a lot of weight (didn't have any extra weight to lose so you can now count his ribs and his backbone sticks out). He's done food therapy through his centre but at home it does not work. He simply refuses to eat - ends up in hospital with something called starvation acidosis. (This is in addition to his other health concerns). The last few weeks, he has started to refuse one of the only three main meals he will eat (at times). He's also stopped eating his one type of sandwich and will eat only plain bread now. You can't bribe him I'm because he does not understand and the only treat he will eat is plain vanilla ice cream - and even that sitting on the Table next to him will not induce him to eat food. He's just figuring out the concept of 'if I do this, I'll get that' so i can't push it too much as he just melts down. WHAT am I going to do? What other parent has gone through this? Supplements don't work because he refuses to take anything orally (even medicines) and even the tiniest vitamin supplement in strong juice or something he notices. He is constantly cold, unwell, struggles with energy, and is SO skinny. Does anyone have any advice for me?
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My six year autistic son refuses to eat - getting desperate
- Thread starter Falafal0
- Start date
Flower44590
Well-Known Member
If I were his mother I would inquire about a feeding tube. They can be removed if he outgrows this phase and it's a pretty low risk operation to place one.
Atay
Well-Known Member
It may have started with some OCD traits (common with Aspies), but it may be way past that now. This sounds like a very biologically-based problem. My sister died of anorexia, and I've done tons of research over the years on contributing factors. There are lots of things that I believe can kill the desire to eat such as histedelia, very high dopamine, reactive hypoglycemia, high adrenaline, etc. Because his has gotten so bad, it is very likely one of these or something else is haywire due to malnutrition. Not that the psychological element isn't important, just that biology can override so many things.
I would try to get him hospitalized so hopefully he can get up to speed nutritionally. Then, I would get a naturopath that studies nutrient breakdown issues. It is VERY common with autism to be unable to breakdown B vitamins, which are critical to all the problems I listed above. My 6yo son has Aspergers (and used to have OCD), and has made HUGE gains since he has been on coenzymated Bs (high-dose for B8). He still has food sensitivities, but it's no longer a serious problem. He used to throw up often when he tried to eat.
Also, consider tying supplements to something important to him. My son would get 20 minutes if TV if he ate his breakfast and took his supplements. Now, we don't have to do that because his body is functioning so much better.
I hope something in there is helpful!
I would try to get him hospitalized so hopefully he can get up to speed nutritionally. Then, I would get a naturopath that studies nutrient breakdown issues. It is VERY common with autism to be unable to breakdown B vitamins, which are critical to all the problems I listed above. My 6yo son has Aspergers (and used to have OCD), and has made HUGE gains since he has been on coenzymated Bs (high-dose for B8). He still has food sensitivities, but it's no longer a serious problem. He used to throw up often when he tried to eat.
Also, consider tying supplements to something important to him. My son would get 20 minutes if TV if he ate his breakfast and took his supplements. Now, we don't have to do that because his body is functioning so much better.
I hope something in there is helpful!
I got fonder of food in general when I understood about nutrition. I was perhaps three or four and we had this anatomy book for children and I still remember the drawings of fat. Pretty fascinating.
I am sceptical to your statement that he doesn't understand bribing or rewards. It may be true, you didn't say how old he is right now or how long it's been since the diagnosis, but another possibility is that maybe he just doesn't think vanilla ice cream is worth forcing a lot of (in his mind) disgusting foods down.
One fast way to get calories is through butter. It tastes bland and is about the same consistency as melting ice cream. Might be worth a try. Sensory issues are hard to work around if you don't know what the problem is.
I am sceptical to your statement that he doesn't understand bribing or rewards. It may be true, you didn't say how old he is right now or how long it's been since the diagnosis, but another possibility is that maybe he just doesn't think vanilla ice cream is worth forcing a lot of (in his mind) disgusting foods down.
One fast way to get calories is through butter. It tastes bland and is about the same consistency as melting ice cream. Might be worth a try. Sensory issues are hard to work around if you don't know what the problem is.
Woa!! I was the same as a kid, and I'm fine now! Apparently I lived off the same small set food items for many many years.
No need to go all force-feeding on him....
I have not suffered any long term health problems because of this. So, a little balance about this is needed I think
At least you know about aspergers, which I didn't have when I was growing up...
Ereth
Well-Known Member
I would agree with you if this boy would eat something other than plain bread or a single sandwich and stop rejecting his nutritional supplements (it's one thing to be picky, but quite another to dismiss almost everything). He's in serious danger of malnutrition if this continues.
Last edited:
thank you everyone for replying!
You're right Ereth - Its more than being picky (he's the youngest of five children so I know the difference between picky and the autism issues). The food therapy course I did with him talked about 'food jags' - therapist said that when a child eats only a few things for a long time, often they may get tired of it and stop eating it, hence a 'food jag'. This is what he's done. He used to eat bananas, apples, yogurt, pancakes, sultanas, etc and because he ate so much of them he simply started to stop accepting them. The worry I have is when he stops eating what little he already DOES - what then? There's nothing to replace it with. And as is known the statement, people say a child will never starve itself. An autistic child will. I'll prep him throughout the day for dinner, saying 'curry chicken tonight, yum!' and at the word he'll scream 'no curry chicken! NOO!'. Just the mere mention.
Ylva, it breaks my heart to admit but it's true, he doesn't understand a bribe. He's only this year at 6.5 years old is figuring out what day of the week it is - and still often gets mixed up. And the disgusting foods are what he used to love to eat - and as his appetite gets less and less, it's harder to get him to WANT to eat what little he will, so he often won't even eat at all, sitting at the table saying 'finished eat, bedtime, bedtime'. He comes home from school often with no lunch eaten either - his aide has taken to holding his sandwich to try to get him to eat. But if he won't open his mouth, even with a 'normal child', if they don't open their mouth, it doesn't matter what you offer them. He used to eat butter on his sandwich but has switched to only plain bread.
He's had a sensory report done early this year - he has a lot of issues. Atay, my heart breaks for you and your sister. I'm so sorry. I must say that anorexia has crossed my mind more than once as I look at him sitting in the bath. He's had metabolic physicists through the children's hospital completely overhaul him, yet they've not been able to find anything that they can definitely say is causing his issues.
I know if I go to his GP, paediatrician or the children's hospital they'll want a vein blood test done - the only time he's had one done (he usually has finger pricks) he screamed so much that blood came up his throat and out his nose - he was that traumatised by three adults holding him down. It really was a life/death situation though a couple years ago at the time and I had no choice. I have not consented to one again. I can not put him through it just to find out his vitamin levels - his history should be enough to go on, surely. We have so many bottles/jars/tins of different supplements that we've tried to get into him in juice, his one cereal he'll eat at times, etc but he's so sensitive he'll figure it out and then will refuse his normal cereal (with no supplements in it to get him eating again) a few times thinking that there's something in it.
Thank you all for replying, your suggestions, your advice. He's had nasal gastric tubes before - I believe something like is in needed at the moment. I wish you all joy and blessings in your individual journeys
You're right Ereth - Its more than being picky (he's the youngest of five children so I know the difference between picky and the autism issues). The food therapy course I did with him talked about 'food jags' - therapist said that when a child eats only a few things for a long time, often they may get tired of it and stop eating it, hence a 'food jag'. This is what he's done. He used to eat bananas, apples, yogurt, pancakes, sultanas, etc and because he ate so much of them he simply started to stop accepting them. The worry I have is when he stops eating what little he already DOES - what then? There's nothing to replace it with. And as is known the statement, people say a child will never starve itself. An autistic child will. I'll prep him throughout the day for dinner, saying 'curry chicken tonight, yum!' and at the word he'll scream 'no curry chicken! NOO!'. Just the mere mention.
Ylva, it breaks my heart to admit but it's true, he doesn't understand a bribe. He's only this year at 6.5 years old is figuring out what day of the week it is - and still often gets mixed up. And the disgusting foods are what he used to love to eat - and as his appetite gets less and less, it's harder to get him to WANT to eat what little he will, so he often won't even eat at all, sitting at the table saying 'finished eat, bedtime, bedtime'. He comes home from school often with no lunch eaten either - his aide has taken to holding his sandwich to try to get him to eat. But if he won't open his mouth, even with a 'normal child', if they don't open their mouth, it doesn't matter what you offer them. He used to eat butter on his sandwich but has switched to only plain bread.
He's had a sensory report done early this year - he has a lot of issues. Atay, my heart breaks for you and your sister. I'm so sorry. I must say that anorexia has crossed my mind more than once as I look at him sitting in the bath. He's had metabolic physicists through the children's hospital completely overhaul him, yet they've not been able to find anything that they can definitely say is causing his issues.
I know if I go to his GP, paediatrician or the children's hospital they'll want a vein blood test done - the only time he's had one done (he usually has finger pricks) he screamed so much that blood came up his throat and out his nose - he was that traumatised by three adults holding him down. It really was a life/death situation though a couple years ago at the time and I had no choice. I have not consented to one again. I can not put him through it just to find out his vitamin levels - his history should be enough to go on, surely. We have so many bottles/jars/tins of different supplements that we've tried to get into him in juice, his one cereal he'll eat at times, etc but he's so sensitive he'll figure it out and then will refuse his normal cereal (with no supplements in it to get him eating again) a few times thinking that there's something in it.
Thank you all for replying, your suggestions, your advice. He's had nasal gastric tubes before - I believe something like is in needed at the moment. I wish you all joy and blessings in your individual journeys
hi,
My daughter (5) is very particular about what she eats, for instance she will often be too busy to eat at social gatherings (like meals out, children's parties, camping for a few days with other people) and it can be difficult. At home sometimes she will only eat if there is something else that takes her concentration like watching tv or being read a storey book. Food types are difficult too as there are a limited amount of things she will eat. My partner has taken the lead with this and has gone through all sorts of food types and meals to try and find things she will eat. It often takes patience and stopping worrying that the food isn't as nutritionally sound as you would have planned! I remember she once told me of a friend at a group who'se daughter was also not very interested in food and how she would sometimes have chocolate buttons for breakfast - but hey she had something!
Personally we have found immense patience and trial and error (mainly on my other halves part) to be key. Fully recognise when you talk of the handful of meals that your son eats!
My daughter (5) is very particular about what she eats, for instance she will often be too busy to eat at social gatherings (like meals out, children's parties, camping for a few days with other people) and it can be difficult. At home sometimes she will only eat if there is something else that takes her concentration like watching tv or being read a storey book. Food types are difficult too as there are a limited amount of things she will eat. My partner has taken the lead with this and has gone through all sorts of food types and meals to try and find things she will eat. It often takes patience and stopping worrying that the food isn't as nutritionally sound as you would have planned! I remember she once told me of a friend at a group who'se daughter was also not very interested in food and how she would sometimes have chocolate buttons for breakfast - but hey she had something!
Personally we have found immense patience and trial and error (mainly on my other halves part) to be key. Fully recognise when you talk of the handful of meals that your son eats!
Goodness ma'am, so much of this sounds familiar. There are several aspects of such a thing as eating. Not only taste, but smell, texture, appearance, association and mood to name a few. At present it sounds as if none of them are being stimulated. I too eat very few things, and I eat them in excess until suddenly I can not stand them, but there is hope.
Your main concern should be his physical health. This is obviously in jeopardy and is justified in intervention. If he needed another "Screaming" test done I would suggest sedation, although the test you mentioned sounds to be unnecessary.
I would start by saying that the foods I tire of come back into my liking given time, and his may as well. My mood greatly affects my meal. You might try ensuring that his mood is optimum when presenting food. As mentioned above, I am much more tolerant of my food and it's imperfections if I am distracted by a story or movie or anything visually stimulating. Appearance is very important. What if you reintroduced pancakes made into a smiley face, or something fun like that. I have also discovered of myself that if my negative reaction to foods that displeased me went unnoticed, that I saw no advantage to it, and just went on to eat. I am now also discovering the pleasure of unknown foods that I thoroughly enjoy.
Another thing that I have found helpful is if I am included in the responsibility of my food. If I go with to shop and can pick things out, I am excited to eat them and am more likely to try new things. If I can take some responsibility for preparing them I also am more into eating them. I would model to him that not eating does not invoke a reaction, but that shopping and cooking are a great privilege that he gets to enjoy.
My hope is that anything in here helps your son to live better.
Peace and good luck to you.
Your main concern should be his physical health. This is obviously in jeopardy and is justified in intervention. If he needed another "Screaming" test done I would suggest sedation, although the test you mentioned sounds to be unnecessary.
I would start by saying that the foods I tire of come back into my liking given time, and his may as well. My mood greatly affects my meal. You might try ensuring that his mood is optimum when presenting food. As mentioned above, I am much more tolerant of my food and it's imperfections if I am distracted by a story or movie or anything visually stimulating. Appearance is very important. What if you reintroduced pancakes made into a smiley face, or something fun like that. I have also discovered of myself that if my negative reaction to foods that displeased me went unnoticed, that I saw no advantage to it, and just went on to eat. I am now also discovering the pleasure of unknown foods that I thoroughly enjoy.
Another thing that I have found helpful is if I am included in the responsibility of my food. If I go with to shop and can pick things out, I am excited to eat them and am more likely to try new things. If I can take some responsibility for preparing them I also am more into eating them. I would model to him that not eating does not invoke a reaction, but that shopping and cooking are a great privilege that he gets to enjoy.
My hope is that anything in here helps your son to live better.
Peace and good luck to you.
Ste11aeres
Well-Known Member
I hate when people say this. As a professional Infant Caregiver, I've have babies that simply would not take a bottle. With one baby (mother's instructions) I had to slip the bottle into her mouth when she was sleeping, and then she would suck out of instinct.
And then I hear people say "If that baby gets hungry enough, she'll drink". All I can think when I hear that is "you (the person saying that) can't have had experience with very many babies/children.
dandelion
...if you see me down, give-me a pudding...
My Guilherme has 7 years (really smart) he is echolalic and maybe going to the verbal level now.
He was a ball-baby who eat everything I did ( Oh, Im really bad at cook, ok). He started to refuse some foods and now he eats:
Well, cant complain my poor kid, because for real... sometimes I cant eat my own food.. he-heeeeee
But its really like this... sometimes he eats a lot of one thing, like.... the meat... a lot of it and then, he just stop.
Some months later, he stop another and after sometime... meat again.
Just the milk, he never drink again, but its ok, because he eat the cheese. And once he tryied the milk with chocolate (hmmmmmmmmm...!!!) but it didnt went well to him, poor kid... So he didnt drink it again.
He was a ball-baby who eat everything I did ( Oh, Im really bad at cook, ok). He started to refuse some foods and now he eats:
- bread (just one type)
- cheese (just one type)
- marshmallow, candy, chewing gum, popsicle (this last is new)
- japanese rise
- fried egg
- meat !!!
- drink: grape soy juice, soda (that last is new too)
Well, cant complain my poor kid, because for real... sometimes I cant eat my own food.. he-heeeeee
But its really like this... sometimes he eats a lot of one thing, like.... the meat... a lot of it and then, he just stop.
Some months later, he stop another and after sometime... meat again.
Just the milk, he never drink again, but its ok, because he eat the cheese. And once he tryied the milk with chocolate (hmmmmmmmmm...!!!) but it didnt went well to him, poor kid... So he didnt drink it again.
Heh… I do this. For a while it's only pasta, then for a while it's only fish, and so on. I don't even know if it is that bad, the body gets what it need, and I take supplements. There could be any number of creative ways to get supplements in him, including being upfront about the fact that you crush vitamin B-complex tablets and mix them in his food of the week.
dandelion
...if you see me down, give-me a pudding...
Oh... cant do it anymore... he know the taste...
aaaaaaaaaaaaahhhhhhhhhhh...!!!! YEAH! He know the taste because he eat it so much that IF you put something he could know!Oh, my... sometimes just putting what you think you can take the answers, right?!?!
Moomingirl
New here and a bit whelmed
There are some ideas in this thread that may be worth trying:
Eating ( or not) | AspiesCentral.com
I note the OP has not posted here since July. I hope she found some solutions for her son.
Eating ( or not) | AspiesCentral.com
I note the OP has not posted here since July. I hope she found some solutions for her son.
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