Published on 12, July, 2020
Hi everyone,
I'm really hoping someone has some cool ideas to help me.
I've known my son was on the spectrum since he was seven, although he was only officially diagnosed with Asperger's when he was 18. He and I have worked together over the years tackling each challenge as they came along (and there's been lots). He's now coming up for 21 and has developed coping mechanisms for most things. To the point where he's happy has a great friendship group and is hopefully off to Uni in September to study his obsession - Marine Biology
But we have one big thing we just can't seem to crack and that is eating! He likes food and is an AMAZING cook. He's gone from eating only pasta as a child to cooking and eating a whole range of foods. Albeit everything has to be prepared to his exacting standards (which is totally fine). He has no problems with the food itself, doesn't care what he looks like and doesn't use it as a method of control.
The problem is he doesn't feel hunger so unless he prompted or has people to cook for he won't eat. It has come to the stage where he is 6ft 5 and weighs only 10 stone! Last month he passed out and fell through a wall. If he gets ill he stops eating completely which means he takes ages to get better.
I am at my wits end and he's now really worried about what will happen when he goes to Uni. I remind him to eat so much it drives us both crazy. He sets alarms but just switches them off or continuously presses snooze. If food is given to him he gets distracted and ends up just forgetting it's there. The only sure fire way to get him to eat is if he cooks a meal we all sit at the table and someone continues to sit with him so he doesn't get distracted and walk off forgetting he's sitting at the table to eat. This could easily be 2 hours though. By which time he's really upset, the person with him is fed up. He's also an adult and this is like treating him like a child, when he is a very clever and capable young man.
He knows he should be eating, it upsets him as much as me that he doesn't. After 20 years of using every trick I can think of to get him to eat I'm all out of ideas and what I say doesn't go in anymore.
Has anyone got any suggestions? At this stage I'll try anything to get him into an eating routine.
Thank you so much, Emma
[spam removed]
I'm 5'4'' and I used to weigh 8 stones, at 18y.o. I'm 13 stones at 43y.o.
8 stones is still far from malnurished
Feinting might have happened for other reasons as well. I have sensitive nose and there is few things that can make me feint.
I prefer to eat what I cook myself, and I used to forget to eat and drink as well earlier in my life, tough maybe not to such an extent.
what works is to have apetite, and physical exertion usually does that trick, 2h at work lifting things, or 1h on a bike, I don't go to gym because of people, and I can't make myself to do it at home anymore, but I used to for few years
he could apply to volunteer at kitchen for homeless, and you could ask other people there to watch him eat, but it isn't easy to get job, I was declined LOL
I intermittent fast. Been doing if for for years, for health reasons. Maybe the rather intense structure of intermittent fasting would appeal to your son....
Hi, I can relate to this as I also have issues with food/eating that are most likely autism-related. It's very difficult when hunger cues are not reliable (I really struggle with knowing when I am hungry/full too and I have unintentionally ended up very underweight in the past- to the point where I was almost hospitalised) and for me it is a vicious cycle where once I under-eat or a meal/snack gets delayed, I get into a state where it becomes harder and harder for me to eat (which is very counterintuitive and frustrating).
What works best for me is to eat quite small but frequent meals/ snacks (3 meals, 3 snacks usually about 3 hours apart) as it prevents me from getting into a state where eating becomes even harder (and it is easier on my digestion as I struggle a lot with digestive issues. Plus small/frequent meals means that it is less overwhelming and less pressure on any one of them).
It also helps me to make preparing food and eating as easy as possible (eg. batch cooking rice/carbs so I just need to heat them and add some protein such as a quick stir-fry; making sure I have a well stocked freezer.; tricks like making potatoes in microwave etc; ). I knew how to cook when I went to uni as I used to cook a lot with my mum but the recipes were all too much effort and time consuming and too difficult for my digestion- It was a disaster for a while with me barely cooking but I eventually figured out how to make a decent meal in under 10-15 min.
I also try to make sure I always have food/a snack available and I try to go for high calorie snacks - my recent discovery is peanut butter (or other nut butters) on bread- very low effort, tasty and high calorie... I have tried timers in the past, but it seems that that doesn't work so well for your son. Making food visible can help encourage snacking too- eg. maybe he could try placing some snacks on his desk or in other visible places in his room.
I prefer to eat on my own, but from what you say it sounds like maybe eating socially is helpful for him too? Is there a cafeteria at his university? Maybe he can get into a routine of going there each day or get some friends to help remind him?
Hopefully he can get into a routine of regular meals/snacks- It can be really difficult at first to get into a routine but for me the small/regular meals really help. But diet/eating is such an individual thing so it is hard to give any advice as everyone is different. I also still struggle so I am not the best person to give advice.
What really helped me and probably save my life was my dietitian Dalia Maori: home | dalia weinreb (dalianutrition.com) She has quite a few autistic patients (in fact she is that one that picked up that I am probably autistic). She is extremely caring and competent- She really cares about her patients and takes a very individualised approach. It is very expensive and I was very lucky that my university contributed to the cost (I was in a very bad state at the time and the NHS waiting list was taking extremely long so my university helped me fund some private sessions and I have continued to work with Dalia since). I can only recommend her. All her sessions are virtual.
I hope your son finds his way. I wish him all the best and a lot of fun studying Marine Biology- that's a fascinating field!! I am a scientist myself (a developmental neurobiologist), but when I was in primary school I had an obsession with marine biology too :).
Best, Ann
Due to intestinal problems, I sometimes need to 'rest my gut' to quieten symptoms. I normally have an appetite, but can essentially switch it off. I sometimes do not eat for up to 6 days at a time and it really doesn't bother me very much. Therefore, I can understand not feeling the need to eat. There are apps, like 'EatWise - Meal Reminder', that you can put on a smart phone, that will give a reminder of when to eat, they are programmable. I believe that you can set the times for meals and input amounts and types of food that should be eaten.
I have this issue! It hasn't gotten quite as bad but there have been very scary moments where I lose a lot of weight quickly because of forgetting and it can take me a while to build it back up.
The first thing that helps me stay on track is that my family has and has always had communal dinners every night. We swap who cooks between me and my parents and periodically my younger brothers (cook doesn't clear up, it's a great motivator for them) Because of this there is literally no way I can avoid eating in the evening while at home. Like your son I am going to uni soon and am quite worried about how that will work but I've ended up with a college that has a minimum dining requirement so I have to spend two evenings a week eating communally anyway,
My other main saving point is that I love cooking. It could easily be a special interest with the amount of time I spend cooking, watching cooking instructions and shows and reading recipes but I try not to look at it that closely. Because of this, I often end up eating because I have cooked. For instance, when my family went away, leaving me truly home alone for two nights for the first time ever, the first day I completely floundered. Didn't eat, didn't drink, forgot every basic necessity. So the second day I decided to make ravioli. It's not a dish you want to cook for more than two people, so I'd never tackled it while everyone was at home, but as I was alone I had the time to do the fiddly stuff and that meant I ate a proper lunch. And then I made risotto for supper so then it was a proper supper too.
Things I could suggest that you haven't mentioned but I'm sure you've tried.
- Snacks just there. When I know I'm going to get absorbed in a project, which is pretty much when I do anything, I take crackers and fruit with me, I grew up reading with breakfast so I'm well accustomed to distracting myself while eating and in fact I don't really like just eating, I have to be doing something at the same time. That way when an alarm goes, particularly if the food is closer than the alarm, it's easier to get started and you don't have to leave the room.
- I've no idea what your sons emotions around cooking are, but new recipes that fit my requirements are always a good way to get me eating. I spend a lot of time on bbc good food looking for my next technical challenge, I'm a lot less good away from a recipe though.
- I have what I call 'light foods' which are foods I can eat when I'm so not hungry that I actively don't want to eat anything, require very little effort to get or prepare, and while not very nutritious in themselves often trigger me to be able to eat other things. For me these are marshmallows, popcorn, rice cakes and frozen peas.
As I said, I'm sure you've tried some if not all of these. I hope your son finds ways around this pretty irritating bit of lack of hunger cues and that he enjoys university. I'm sure others on this site may have other suggestions.
Let them know you are there. Make sure the person knows you're here to listen and can help them find support. Try not to get angry or frustrated. They might already feel guilty about how their behaviour is affecting you. Don't make assumptions.
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I am on the autism spectrum and i happen to have ADHD too. This is how i have managed this behaviour is through adaptive smart technology such as smart speakers and smart televisions/screens. My smart system is designed to disables all screens in my flat for an hour around my allocated meal time and the TV in my living room because a visual prompt telling me why it disabled and has a countdown of how long it going to be disabled. the only device that doesn't disable is my mobile phone however my phone get reminders when i am out the house at the same time to eat.
I also have a system in place to control my overeating issues, Because i wasn't recognising when i need to eat my body started putting on weight and i was eating in binge eating in episodes to make up for what i missed and more. I have back up food options such as meal replacement shakes, i use the tesco SLIM ones because they are convent one box has 10 sachets that make up a pint of fluid.
I haven't actually and that's a good idea. He got his diagnosis in June 2020 so it all got caught up with the pandemic and he doesn't really use the phone. I'll talk to him today and see if he'll be happy to book an appointment and hopefully let me come too! Thank you :)
Have you gone with him to a doctor about it? There might be suppliments he can take to support his health, and medications that he can use to induce hunger and increase appetite.
Would he eat meal shakes? Quick and easy. If he also needs more calories it might be worth seeing a Dr for some advice but my friend use to have full fat cream with his cornflakes to bulk up.