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
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