My daughter Paige is 23 now and she has always found eating difficult, in the sense that she’s not adventurous when eating as she’s afraid foods she doesn’t know will make her sick, and that if for one reason or another she feels unwell or has an effect after eating a food that particular food is put on to her “forbidden” list, never to be eaten ever again. Now Paige eats very little other than sandwiches, cheese, hot dogs in rolls and until recently tomato soup. The soup recently caused her heartburn so that has now also been added to her forbidden list.
Paige is not eating enough and I’m worried that she’s going to make herself very sick in the end. I’ve expressed my concerns to her but she says she’s too scared to try new foods or the foods that made her feel weird. I am worried and I don’t know how to help her with this. She won’t see her gp or anybody else about it. Please help me.
Hello and welcome to the forums. I've no expertise in this besides being autistic and having autistic friends. Is your worry that Paige is not eating enough, or eating unhealthily? And when you say 'sick' do you mean fear of nausea or any kind of 'unwell'? Fear of vomiting ('emetophobia') can limit people a lot. Is there any reason to think she's physically more sensitive to different foods than other people? Does she think so? Does she prepare her own food? You might find some related experience in other threads on this forum if you search.
All I know is that qualified dieticians can help enormously with any eating disorder or fears or routines around food. They can be very understanding of people's psychology (such as underlying depression or anxiety) and aim at routines that are healthy even if idiosyncratic.The trouble may be getting Paige to agree to this help, and then finding it. A GP should be able to refer, but services can be scarce. Some eating disorder helplines.
Maybe be honest about your fears, but avoid any pressure? Pressure usually makes things harder for autistic people (see PDA demand avoidance). There are lots of healthy things that can go into sandwiches. Assuming she lives with you, presumably you can leave salad and fruit available in case she does feel well enough and decide to experiment: for example, a cheese and apple sandwich probably isn't that much more nutritious, but is more interesting...
I’ve tried encouraging her to try different foods. I’m never forceful or if I am I don’t intend to be. It’s just a worrying time as she’s looking thin, pale and I really don’t think she eats nearly enough. But when I tell her this she says she’s fine. Other than her sandwiches she really doesn’t eat anything else, not even snacks during the day. She was eating biscuits but they gave her a stomach ache so she stopped with those as well. I would say Paige has emetophobia, though she also does have a fear of getting ill from colds as well. Her fear of vomiting began when she was twelve after she’d got car sick, from that day on she hardly went out in the car and became very cautious about what she ate. If someone else was ill at home she’d stay in her room and if they were ill at school she used to come home. I assumed it was just her part of Autism why she’s sensitive towards food but I am worried she may have a condition causing it as she has said before that foods that cause her problems get added to the list, but I’ve never been able to get Paige to the doctors to identify what other problems may be causing this, if any. I make Paige’s food but she does give it a thorough inspection before she eats it. In the past I’ve noticed if she thinks her bread looks “off” then she will pick around the bad bit.
Thank you for the help lines. Getting Paige to agree to go to see someone will be very hard. In the past whenever I’ve tried to take her to see anyone professional she has a meltdown which usually results in a bad panic attack after. But I will try and talk to her again about this and see if we can get it sorted as I don’t think this can go on for much longer, a girl her age should be eating a lot more and she shouldn’t be having bad effects from the food either. And I’ll try not to make her feel pressured.
And for the meantime I will try and spice up her meals. We have apples so I will try the cheese and apple sandwich at lunch and see how that goes down. Hopefully it will be something Paige enjoys.
Thank you for your reply.
Maybe try calling some eating disorders helpline to see what are the steps to follow. If she is really not eating enough.
That what Cassandro said about seeing a dietician is a very good idea, I didn't know eating disorders came within their parish. I thought of a few other things that might be useful. I've no experience of this myself, mind you, though it's not the first time I've heard about it.
I put together a long sheet of advice the other day for an adult with autism who was struggling with talking to their doctor, based on my own extensive experience, and someone who'd had the same problem said it was good, so maybe some of it will be useful for making it easier for Paige to see a doctor. Here's the link: https://community.autism.org.uk/f/health-and-wellbeing/18887/pain/143937#143937
It's common, for some reason, for people with autism to have temperamental digestive systems. (Maybe you already know that, I don't know.) Not everyone, mine's fine, but a disproportionate number of people. So it's quite possible she does have something the matter with it that a doctor might be able to do something for. It might be that there isn't and she's just paranoid, of course, but it might well not be.
In the meantime, she should take a daily multivitamin. Unless what's in the sandwiches is something with a lot of vitamin C, she could literally get scurvy on that diet, like an old-time sailor. (Yes, this is occasionally known to happen, in people who eat nothing but junk food and things out of packets - doctors call it "bachelor's scurvy". Don't panic, it takes at least a month without vitamin C to develop any symptoms, but it does happen). That won't cover everything, of course - the fact that it seems to be simply not enough calories, for one thing - but it'll buy time for experimenting at her own pace. (It's OK, I've never heard of multivitamins making anyone sick.) If she is short of some things (iron too, maybe), she might actually feel stronger for putting that right and better able to face different foods and/or visits to doctors.
Discuss with her what she'll do if she does feel sick. Remember, it won't do her any actual harm, and she'll be back to normal within a day, or two at the outside. The human digestive system is very tough indeed and can handle most things. For a few years I was violently sick at least once nearly every week, as part of a migraine attack. I stopped bothering about it pretty quickly - in fact I'd get impatient for it to happen, since once I'd been sick the headache would go away!
If she does start to feel sick, Healthspan do these peppermint oil capsules that are absolutely magical at that. The instructions say to take one a day, but I think that must be for something else - I just take one capsule as needed if I feel sick, and it goes away. She might have a bit more courage to try things if she knew there was something she could do about it if she did feel sick. I don't know if other forms of peppermint like mint tea or mint humbugs work be as effective, I haven't tried. Actually, Zipvit do them too and Zipvit deliver particularly fast, which you might want if you're in a hurry. Note that Zipvit's peppermint capsules are half the strength of Healthspan's and say to take two at a time. Here's the links if you want them, and for multivitamins too while I'm at it, although your local chemist probably has those.
People with autism often have to spend a lot of time forcing themselves to get used to things they hate, because they need to do them or just because people say they ought to do them because they're "normal" things to do, and they get to expect that. So remind her that this one might actually be OK, in fact probably will. Most of the foods she's been avoiding may actually be safe and it was something else that upset her stomach last time she ate them - something else she'd eaten, or some germs she'd swallowed somehow that were a fluke and wouldn't normally be there, or anything. She'd feel a bit silly if she avoided something nice to eat for weeks or months and there was actually nothing wrong with it.
By all means pass on any or all of this message to her if you think it'll help.