what next!!

[bambi06]

my son(5 yrs)has had a restricted diet since he was young and as hes got older hes self restricted it and has very sensitive issues regarding food..wont sit at the table with us if the food were eating is too smelly etc and only eats weetabix , toast with marmite(cut into fours only and no ragged bits!) plain certain bread rolls, certain yogs ,apple and banana plus up till recently we got chips into him which was our life line at eating out but he has told us he doesnt eat chips anymore and that usually means ..is that!! and he WILL NOT eat them for love nor money..and hes been talking about his toast being funny and he s going off his bananas,, god knows how hes going to manage as hes getting very hungry and all he wants to eat when he comes home from school is weetabix and toast..and more toast ..and more toast!! imagine the looks we get from people when and if we ever invite people back for tea which upsets my son as they notice of course and ask questions.. holidays are a nightmare as we have to take supplies of weetabix and marmite and always make sure we can access a microwave to warm the milk up for his weetabix.. its hell.. how does everyone deal with restricted diets( hes asd by the way .) please any advice on ways around it would be brill..GOSH couldnt help after we went on their feeding program for 3 months!!i just get so stressed at every mealtime , he doesnt keep still. takes ages to get to the table, and then wants to go down the minute hes eaten anything..restaurants are a nightmare but my daughter loves chinese which is no go for my son as he doesnt like the smell and they dont have the food he wants so we have to take packed lunch which restaurants frown upon and then theres the behaviour when we are out ..loud , hiding under tables ,anything so he can get out of there!! but how can we get him to eat or even try without major meltdowns..or should we just give him what he likes and leave it at that?

I know EXACTLY how you feel- you have described my son L (Aspergers) as if he were your son!

He can tell the difference between types of potato...so if i can't get King Edward or Maris Piper- i might as well not buy any- he WILL not eat them.

A FANTASTIC book- which i got out the library.....

CAN'T EAT, WON'T EAT........published by Jesicca Kingsley publishers-

fantastic.... all about kids with ASD...so sympathetic to the sensory issues.(described my son in there too....picks crumbs off everything-craves salt)

Best bit i learnt was the letting the child smell,touch,lick the food- and building up through this over days/weeks to the point where they tolerate it in their lips- then bite it- chew it- and even spit it out into a tissue.....

through that book got L to 'tolerate' no more than 6 peas in a meal...i have agreed to not add more...and we are now working on him tolerating food on his plate that he hates....or has too much of....so that if we are eating out and they add peas/salad etc...that he won't start running wild.(last year i was sooooo proud- he agreed to try a burger at a pub as he liked the look of it in the picture menu...when it arrived it had sesame seeds all over it.....he went beserk. tried using my roll bottom as a replacement top- but he refused to even try it. since then he refuses to eat burgers anywhere but hom.. (i see this as 'fear of the unknown)

L is now 8 and we still have awful trouble eating out etc....but at home

he will eat Choc spread sandwhiches
Toad in the hole
yorkshire pudding
100% beef burgers in a roll (only cooked at home though!) NO onion!!!
Ross Grill Steak
egg-sized ammount of mashed potatoe
same ammount baked beans
Asda value rage pizza (NO green bits!!!!)
4 or 5 slices of carrot once/twice a week(slices size of a 2p...chopped up into tiny bits)
NO FRUIT AT ALL
....so he doesn't even get 5 portions of fruit/veg in a month let alone a day

NO EGGS

Cheese has to be melted...so wouln't eat a cheese sanwhich - but loves cheese on brown bread toast

NO puddings/yogurts- yet will eat sweets/chocolate

Infact THE ONLY MEAL WE ALL EAT THE SAME OF is Pancakes....sugar and lemon!!!!

So appart from the fruit/veg....i accept now that though we cannot 'simply have a meal' that there are enough foods he will eat to keep him growing!

You are right though- when people see what he eats as a cooked meal- they comment- but i am hardening to that now- as at 8 i still have to feed him anything he is 'scared' of- and the act of feeding him gets more attention that WHAT i am feeding him...he is not embarressed that i feed him- and i tell onlookers that if i didn't he wouldn't eat....as though i say he eats all those foods above- in reality HE doesn't FEED himself with all of them.... if i were to say the food he will eat himself- then the list would be

Choc spread sandwhiches
Toad in the hole
yorkshire pudding
100% beef burgers in a roll
cheese on brown bread toast
Pancakes....sugar and lemon!!!!

oh and he loves sugary milky cups of tea....well that is the only way he will take milk....so i try to convince myself that the calcium intake outweighs the sugar!!!

so hope this reassures you that i truly understand.

Bambi06-My DS is also 5 (will be 6 next week!) and has a similarly restricted diet. He is currently being assessed for ASD.
His diet has always been restricted, but has recently become even more so. He eats cheese spread on either bread or rolls; one type of yoghurt; jaffa cakes; chocolate bars and not much else at the moment. Absolutely no fruit or vegetables; no cooked food; no cereal-and he used to love some cereals, but now refuses them all.The one good thing is that he will drink milkshake. He is also very reluctant to sit with us to eat a meal.
I have no suggestions for coping Im afraid as we are struggling with it ourselves-just wanted to sympathise!

Bambio, I've got the same problem with my ds, only foods that are really bland, with no "bits" in, and everything has to be done just right, or else. I had major concerns about this and showed his dietician his food diary, she wasn't overly concerned even though I believe he hardly eats anything. She said that she would me more surprised if a child with ASD had no food concerns, but she emphasised the importance of vitamin supplements.

MrsF-We posted at the same time! (I think we share the same late hours!)
I have just ordered the book you mentioned from the NAT and am hoping to learn some helpful strategies from it.
My DSs eating really became a problem just before Christmas. We went away to Centerparcs in early December for the weekend and DS got into a terribly anxious state generally. He became frightened to eat and thought all his food was contaminated in some way.He actually stopped eating completely for a few days over the Christmas period-very stressful. We managed to get him eating again but he is certainly not back to "his" normal yet. It is impossible to get him to try a food outside of his range as he will refuse to eat anything on his plate if we dare to put a new food on it!

I don't want to depress you, but DS2 at 14 is still like this! I was heartened in a way to read what you wrote Mrs F, as it's rare to find anyone with this problem.

We have often thought that DS2 exhibits signs of Aspergers, and did look into this, but were told that he didn't, that he was "emotionally immature", and generally made to feel bad parents. I have never had this eating problem taken seriously, and believe me, if you have a 14-year-old still like this you are getting pretty desperate.

He can spot different brands of apple juice a mile off, and every time the b**y supermarkets produce a new, imprived version of one of his foods, it's another struggle getting him to accept it.

Children can thrive on very restricted diets, and we use multivitamins to make sure he's getting what he needs.

Sorry about the rant and moan. Should we investigate again for Aspergers?

MFH- it's strange really- but when i found the book i mentioned in the library- it was the title that causght my eye...not the fact that the subtitle said AUTISIM....so i would have got it out reguardless....then as i started reading it so much of what it described applied to my son that 'simply reading the book' fueled my concern that he wasn't 'just a faddy eater'....that he 'wouldn't grow out of it' and he was GENUINELY PHOBIC about food.

So...if i were you i'd jot down any other things that are AS related that your son shows....its difficult at 14 as by then (as i believe i am AS too) ...the teenager has learnt to compensate and mask alot of their 'symptoms'....so you may need to look backwards...

but 'if' he's like my 11 yr old- he may have fairly narrow interests....and talk about those to distraction....but find it hard to share in your interest....and T will ask my opinion- then before i can reply he goes on with 'his' thoughts.
You may therefore feel very lonely- i do.... i have 3 talkative chatty lively boys...yet really 2-way conversations just don't happen.

also- what's he like with understanding how others think/feel- AS tends to mean that they lack empathy and genuinely cannot 'read peoples moods' etc

rather than go on....take a look at this website.... its got 50 pages to view...but it is easy going....and i feel quite appropriate in an older child.

www.aspergerstips.com

also

www.wired.com/wired/archive/9.12/aqtest.htm

and

The following quiz will help you decide if you know enough about the general characteristics of someone with Asperger?s or if you need to learn more.

1. After explaining something to someone with Aspergers, is it recommended to engage them in conversation to be sure they understood what was said? Yes No Yes, because the ONLY way you can be sure that someone with Aspergers truly understands you are to interact in conversation with him/her. With a tendency to "not see the big picture", they often take things out of context or mis-construe the true meaning of what is being conveyed. Also, with a tendency toward literal interpretation, teachers need to check for accurate comprehension. Many students with Aspergers find the school setting over-stimulating and stressful. They cope by responding in as few a words as possible. This serves to end the conversation in quick order. Responses to questions like, "Do you understand?" are typically answered with "Yes" regardless of whether or not they truly do understand. In addition, an Asperger student might respond that they positively do understand because they believe that they do; when in fact, they might not. The only sure way to check for comprehension is by initiating an in-depth conversation on the subject in question.
2. People with Aspergers learn better by listening or seeing? Seeing Listening Seeing, because students with Aspergers Syndrome are visual learners. They often have auditory processing disorders which make it difficult for them to comprehend what is said. Students with AS need visuals to learn. 3.It's important for someone with Aspergers to finish what they start. Yes No Yes, because Temple Grandin reported that if she was interrupted while giving directions, she was compelled to 'start over'...from the beginning. Seeing the big picture (the Gestalt) is a weakness for students with Aspergers Syndrome. They are excellent at cataloging information in discrete form. They are good at rote memorization too. Above all, they are always looking for the patterns in the task at hand. The world is a very confusing place...socially. Patterns create order out of chaos. It is very comforting for someone with Aspergers to have control over their environment. That includes beginning and ending a task on their terms. As it was for Temple, giving directions is rewarding in itself when one recalls the order of where to begin, which steps follow in order to the end. Recalling the directions correctly and in order is a reward unto itself. The typical person might be more (or only) focused on giving enough information to satisfy the person asking for directions.
3. It is not necessary to determine what the special interests of a child with Aspergers is when designing their educational program. True False False, because Children with Aspergers Syndrome have areas of special interest. These are typically subjects in which the child has amassed some degree of knowledge. This knowledge base provides a degree of security and familiarity for the child. It is a topic in which predictability can be found. Special interests build self-esteem and reduce anxiety. They provide security in an otherwise confusing world. Teachers can use the child's area of interest as a pivotal point for teaching new concepts. By using the special interest as a subject, the teacher has an advantage in that she already has the student's attention and focus.
4. Children with Aspergers can be taught to have good handwriting. Absolutely Occasionally Occasionally, because Handwriting is usually difficult for children with Aspergers. They are often observed "drawing" their letters as opposed to "writing" their letters. The process of learning to write is a laborious task due to visual-spatial problems, hypotonia and poor fine motor control of their fingers. Learning to use a keyboard early on is recommended for these students. The skills needed for typing are not as demanding or complex as those needed for handwriting. Oftentimes, students with Aspergers use so much energy to write that they have little energy left to devote to the assignment at hand.
5. A student with Aspergers can appear calm at school and rage at home. True False True. It is not unusual for the student with Aspergers to "hold it in" all day and release their stress at home; their comfort zone. School is a very stressful place for the child with Aspergers Syndrome. Social situations keep them in a state of confusion. Environmental conditions cause sensory overloads. The result is increased anxiety. Whenever a child is experiencing rage or simply acting out, attempts should be made to look for the triggers. Reducing the anxiety may require a change in schedule, taking time off from school or eliminating homework. Flexibility is key!
6. People with Aspergers can not empathize. True False False. Many people assume that individuals with Aspergers cannot empathize. This is not true. Just like their typical peers, they can empathize and sympathize by relating their emotions with their experiences. The difference lies not in their ability to relate emotionally but in their ability to grasp the perspective of others. If they, themselves, have experienced a similar emotional experience, they can "relate" and react with shared emotion. If they have not had a similar experience, they might lack the ability to perceive another's state of mind and therefore, not react appropriately. For example, if a child with Aspergers has never had a pet, they might not understand the sadness another might feel over the death of their pet. If they have a pet; however, they would likely "understand" another's loss and empathize.
7. A student with Aspergers can be a model student one week and demonstrate behavior problems the following week with no changes in the class or teacher. True False True. Inconsistency and unpredictability are hallmarks of Aspergers Syndrome. It is not unusual for puzzled parents or confused teachers to wonder why their seemingly content and cooperative child becomes explosive and oppositional for no apparent reason. Some children with Aspergers are affected by changes in the seasons, schedule changes at school, or anticipation of holidays...to name a few of the triggers. Patience, understanding and good detective work are needed to get to the bottom of the sudden change in personality.
8. When a child with Aspergers misbehaves, he should be put on time-out and punished for his behavior? True False False. Punitive measures do not work for children with Aspergers Syndrome. They usually serve to frustrate the child and contribute to eroding his/her self-esteem. Giving "ultimatums" also does not work. Whenever possible, teach the rationale behind why he/she is expected to behave a certain way. Assume nothing. Children with Aspergers often lack the intuitive understanding as to what is "expected" of them. Likewise, they often lack the repertoire of socially appropriate things to say and do in a variety of social contexts. Situations that would dictate a "time-out" for a typical child are usually opportunities to teach social skills to the Asperger child.

Thanks for all that Mrs F. DS2 seems to have some Aspergers traits but not others. I shall look at the links you gave, and have a rethink.

Sorry to hijack the eating thread.I was a very fussy eater myself, though not as bad as these children we're discussing. When I was about 18 or so suddenly I could eat a range of things, and I wonder if DS2 will be the same. I'm still perhaps a cautious eater, where DH can eat all sorts of stuff when abroad (octopus, snails, Japanese things) I would be put right off.

I try not to make a fuss about DS2's eating. It's his problem when he's at a friend's house.

Thanks again for the info. I must look into this

Mrs F-so much of what you have said applies to my DS.
Have any of your DSs ever totally refused food as mine has recently? The clinical psychologists we have been seeing told us that very occasionally a child with ASD may need to be put on a drip, if they also refuse drink.(DS was also very relucutant to drink for a couple of days but we did manage to get some fluid into him. They have advised us to take hin to A nd E if he ever gets this bad again.

no...but after being force fed- ds2 has been sick.

back 2 years or so- no mealtime was without tears....now i have learnt to work round him....and accept him....BUT.... like i said i am aware how 'unusual' he is ....and amazed that he is as well built and healthy as he is- he does get constipated- but hardly ever gets a cold etc- DS3 eats loads of fruit and veg- and he is tiny and gets everycold going!

obviously if a child refuses food full stop it's different to the limited variety that my son has.....i sometimes wory if he will always have this phobia/anxiety- and it will in the end be nothing to do with autism- but down to all the 'surrounding issues....arguing,vomitting,crying'...and that then worries me about eating disorders in later life (i have a 'binge eating Disorder)

As I mentioned earlier, my DS will normally eat from his limited range, pretty much in the same way as your DS. However, the intense anxiety state he got into just before Christmas led to this complete refusal.Initially he said he was afraid of choking and was actually coughing and spluttering when he tried to eat.Then over the course of a fesw days this changed into the fear of there being something wrong with the food. The slightest mark on it led to his refusal to eat it (even things like the darker bits in Weetabix). Although he is now eating a bit, everything is still examined-and he will never completely finish anything-he "has" to leave the last bit.

DS2 has never actually refused to eat, but he does seem to have a phobia about swallowing tablets. I am now refusing to buy Calpol for a boy bigger than me. Tears and choking last week when I tried to get him to take a capsule of medicine - we had to practice with swallowing dry Rice Krispies before he could manage to do it.
I've been back to the Aspergers criteria - one thing that doesn't fit is the lack of imagination - he's always had a very lively imagination and is a good creative writer. If he is Aspergers, it's mild I think - this is a spectrum after all. When I get more time I'm going to look into this.

gosh its like youre all talking about my son, especialy bit about him always having to leave a bit of food on his plate and the phobic behaviour.. he says he will be sick and it will hurt his tummy if he eats anything new..anything sloppy has to be fed to him as hes scared he will mess his clothes( im certainly not a cleanliness issue parent!!)if we go abroad he refuses the milk because(its tickly is his way of putting it)its different tasting and i must admit i dont particularly like it either! in jan he went away with his daddy abroad to visit his gran and for about 3 days he wouldnt eat and they were worried he was going to have to come back home and then he would only eat if he could call me before to say it was o.k to eat there!!bizarre behaviour and it NEVER alleviates. we wonder how on earth he is the size he is( imagine a rugby player and youve got him) and has so much energy no body can keep up !! yet like someone else said my daughter who is a brilliant eater and will try anything and has incredibly adult taste buds( favourite food is calamari, olives, pickles) gets loads of colds and always seems ill yet my son only has bowel problems and rarely gets ill at all and if he does he shakes it off really quickly and is back bouncing around the next day.. somebody at GOSH said that these children fully utilise EVERYTHING they eat so no food is wasted yet normal eaters only take in certain amounts so require more food to get the same level..sounds about right to me ..but how do you all manage on hols if they dont have the food they like..i cant imagine taking a suitcase of food on holiday when hes a teenager and how do you all deal with him eating at others houses( friends after school) my son calls me up to ask him to take him home as he`s scared..poor thing..have you had much success in getting him to eat anything...by the way are any of you local in london(se london) to form a support group as somewhere to to be able to chat to understanding parents..if i try to others they just dont fully understand the issues we have )thanks for letting me rant and moan..it helps..

How old is your son, Bambi? I feel a lot better "owning up" to this problem, as others of you share it.
Our stock food here is pasta shells, so if anyone I know in RL is reading this, that has "outed" me. I used to take it on holiday, and guess one reason why we're going to Italy this year!
Can you imagine sitting this lot down together and finding a meal they would all eat? We're in the North West, not London I'm afraid.

Bambi06-Our two boys do sound very similar, dont they? I have to reassure my DS that food is OK before he will eat it. He certainly would not eat anything at anyone elses house. For a while earlier this term, I was picking him up from school and bringing him home for lunch,as he would not eat there either.
He is eating now-in very small amounts. He is very thin-not like your DS. In fact one of the things concerning the clinical psychologists and paed is that he has not actually gained weight in the last 12 months (or at least he did, but lost it in the crisis we have had since December.
I live in south-east london, by the way-whereabouts are you?

hi tiggywinkle, my son is 5 yrs old and we live near beckenham/crystal palace..se20 anywhere near you, we could put our two boys together and let them sort it out amongst themselves!!!what fun..!! i cant remember how old you said your son was/ what school does he go to?

a friend's son did this food refusal- and heaved/vomitted etc.....apparently the way it was resolved was that he was only given a food he would eat for weeks - this then means the 'heave reaction/reflex' is 'forgotten' by the body..... then gradually other things are reintroduced.

have you read "can't eat won't eat" published by jessica kingsley.

ds1's diet has been self restricted following his regression at a year (he's now 5). he is toast boy as well (althoiugh he has revolting gluten free stuff). he's non-verbal so we don't get the arguments- just complete refusal. I tend to offer him small amounts of different foods very occasionally he'll add one).

btw ca't eat won't eat made me feel better even though it didn't have miracle answers, realised he wasn't the only one...

yes- agree with that...i am more accepting of how L is since reading that book

I am waiting for "cant eat wont eat" to arrive-I ordered it last week from the NAS. My DS absolutely will not try anything new-at least not at the moment, but I am just relieved he is eating anything at all. It was so awful when he refused food altogether-but this was just part of it,as he also became obsessively worried about other things as well, and was more or less paralysed by anxiety for a few weeks.
Bambi06-I will CAT you with my email if that is OK.

Bambi06-Tried to CAT you, but it came back that you do not accept messages?

tiggi- the book is great!!!!

Must be the area- we used to live in Bromley (nowhere near now though).

You have escaped then Jimjams! Where are you now?
I am not a Londoner by birth-originally from Gloucestershire (moved here many years ago!)