Now we are into the aftermath of the Easter Egg hunt. Son is happily piling on the calories and his Dad is looking at a bowl of dairy free cornflakes. Is this what my life has been building to…..

To be fair that calorie balance is right. Son tends to be very long and always below the median weight for his height. That is tall and slim. His Paediatrician told him that it was a great excuse never to diet. His Dad is average height (or to be strictly true – 0.5 cm above average) and keeping to an ideal weight is a bit of a struggle. That is big boned.

Son’s diet has been a struggle recently. Aspergers likes order and routine. We stick to the same 7 day food rota every week. To be fair it’s a reasonable diet with much fruit and vegetables. And many sausages…… But over the last few weeks many of his foods of choice have become unavailable. This has required change and change means STRESS. On top of the enforced food switches an increased fear of becoming ill has surfaced. So now he is desperate to eat healthy and avoid too many calories.

So the parents dilemma is trying to put that into a routine which is both sustainable and is actually a balanced, healthy diet for him. That’s at a time when fresh fruit and vegetables are often much harder to source. So keeping the calorie intake sufficient going forward might be a serious challenge. He has already started to refuse foods he considers unhealthy. He’s even started to question his chocolate intake. As the paediatrician explained a couple of years back

his weight is right at the bottom of the perfect band, but don’t let it drop below that. If that means a few more bars of chocolate than usual then that’s just fine. But just watch him. We really don’t won’t to go down the line leading to eating disorder.

Eating Disorders within the Autistic community is a significant issue. Research into eating disorders such as anorexia have found that anywhere between 15% to 35% of total cases can be linked to people on the autism spectrum. However food disorder health care is still largely done in isolation from autism specialists. Autistic services continue to be squeezed as a result of government policy priorities. So improved care and support for autistics with food disorders is unlikely to improve under the current UK government.

This may well be the latest challenge our son has to face down. So long may he tuck into his chocolate egg.

93 thoughts on “Food”

  1. I had no idea there was a link between autism and eating disorders. There is so much left to the imagination of those who aren’t raising children on the spectrum. Keep writing and sharing. It’s very eye opening. Both you and your son deserve to be heard.

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  2. I’m sure you’ve probably already thought of this, but what about dried fruit? Is that maybe a readily found item? Although I’m sure a lot of people are probably pushed in that direction.

    I hope his stress eases, I can’t imagine how difficult a situation these current circumstances
    must make an already difficult situation.

    Good Luck!

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  5. That makes sense, the ED and autism. Routine and order, counting and control. Rituals. I could say a lot about this topic. 🙂

    Being unable to maintain routine causes great anxiety for us “normal” OCD types. How much worse it must be for your son. Hope you can find more of his preferred foods…

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  6. What if you make it like a game? Make it fun?

    Let me explain… so I am similar to your son in “some” ways… I don’t think I am autistic but I have what I call my “little quirks”.

    I too, like to have meals scheduled – I know what’s going on – you don’t have to ask what’s for dinner – I have everything on hand when I plan – I like that too.

    Obviously right now that’s out the window… but what if you … hmm let me think how to explain?

    You know how you have the corn flakes but no milk products or whatever you use… ok what if you both become little chefs ??

    Take whatever items you have on hand – think about their taste and texture … and figure out how to mix and create dishes ?

    Make your own coronavirus cookbook? … we had a depression here in the United States back in 1929… they did that sorta stuff back then and we have many depression era cookbooks

    A coronavirus cookbook be kinda cool!! I’d totally be interested

    And maybe he be more apt to change when he creates that for himself? Add excitement to it? Plus he would get to do that with you, so that would probably be fun for him too.

    I have picky eater kids, myself – so been hard but we doing ok

    If he is happy and eating – let him have whatever you able to give him. If he likes healthy … are you specifically looking for gluten free or is that just you? Nuts and avocados 🥑 are amazing ❤️ dried fruit if you can’t find fresh or frozen… rice, oatmeal anything he likes.

    I had Graves’ disease so I struggled to put weight on myself – as a woman – other women do NOT understand so it was really hard!! Sounds like an amazing problem – yes I know – but is not!!! It’s really hard. While people be gentle with others issues, that was not an issue people would ever be gentle or compassionate with. They think because you thin you are lucky, and it’s ok to make jokes or comment – it was just hard … we all have our things right?

    So ya know… just do what you can for him… see what he’s open to – or – that he will allow you to open him up to. ✌️

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    1. Gluten, Dairy and almost completely meat free is just me. It’s his call completely. He’s certainly looking at these diets. We are sort of trying similar textures. Trying to ration his favourite foods (save leftovers) and make sure they last. We are trying to grow more vegetables this year. That will help. Did manage to get a few more supplies of some of his favourites. That helps as well. x

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  8. He sounds like an extremely bright child willing to work with you despite his fears. Have you considered “brainstorming” with him on acceptable substitutions/changes for when shortages occur? I realize it’s near-impossible to know what you’ll find at the market–living that nightmare also–but if he’s already helped decide what’s acceptable, “perhaps” it won’t be a stressful change for him.

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  9. Poor Son! The stress is getting to him.☹ Food control leading to an eating disorder makes sense.
    Our kiddos want to have control over *something* when the things they’d relied on aren’t reliable anymore. High stress is the worst time to try new things too.

    Ben won’t eat fruit or veggies at all.🙄 Sometimes a carrot or piece of apple if it’s very crisp. He gags on mushy so peaches, bananas, etc are out. He doesnt like raw broccoli or cauliflower…
    And his medication makes him overweight. As much as he moves around, he’s still got a gut. Before the meds we could see his ribs no matter how much he ate.

    I’m glad that Ben seems oblivious to what’s going on. I’d be happy to look out for dried or canned things and send them to you. I can get some fresh & frozen but it would be rotten by the time it reached you, I’m sure.
    I know how important certain foods are to our guys.💌💌

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  10. Surely the eating disorder specialists must realise they are seeing a lot ASD patients, particularly with underage patients who arrive with caregivers/parents. They need to get their act together.

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  11. its odd, working with children over the years as an RN in Home care- I’ve always known about the eating problems with autism, as well as other syndromes and mental health disorders. This cannot be easy. The kid i have been with is now age 7 and still has feeding tube for overnight feeds, even though he can and does eat well during the day by mouth. What tends to happen is one of 2 things with these kids :1> they will eat a lot by mouth but are so damn picky it would never sustain them nutritionally. or 2. the parents refuse to work with them with the ongoing help of the feeding clinic and nutritional therapists.By that, i mean- they are so AFRAID to try the recommendations or afraid to be firm about compliance, the kid never really learns to eat healthy( “i don’t want to be the bad guy”).Some of them wind up staying on feeding tubes well into their teens. Kids on ventilators are especially vulnerable to eating challenges because most come home with belly tubes. If they cant transition to eating by mouth by age 3 ,it becomes a HUGE ordeal that can last into their teens. It doesn’t sound like you son has this issue but i do understand how picky these kids can be and what a challenge this quarantine must present

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    1. No he doesn’t. We found a way of him largely eating healthy stuff but getting some more calories from things like chocolates and sponge cakes. Yes it was the exactly the same diet pattern for years but it stopped him falling into the underweight category which he previously had. I guess the way to look at it is that we need to find a new diet which HES comfortable with and ensuring he’s getting enough good stuff and calories to support a body seemingly heading towards well into the 6ft’s x

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  12. It’s so understandable that eating disorders and autism are linked. Years ago I specialised with pre-schoolers with autism and ran a ‘food’ group … there also used to be a feeding clinic at the hospital too but like everything it was cut due to resources and money. It’s such a huge stress for parents and a very difficult thing for them to deal with. I really hope it settles down and that we can start to find some fresh veg and fruit on the shelves soon. Keep smiling x

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      1. It’s so tough isn’t it? Each time I go there is a few more items. I’ve been buying gluten free for the lady down the road and that’s been ok really.

        Working from home today so sitting in garden for 5 mins with a cuppa. Managed a post last night too … it’s all go here! 😂

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  13. Oh dear… Yeah I think a lot of shortage is down to where you live. Our supermarkets and wee shops are n’t short on fruit or veg But I imagine where you are…..yeah? I know some places are doing online deliveries of fruit and veg fresh. like some of the smaller local businesses shut up shop to do it that way. Don’t know if there’s any in your area?

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  14. Lol sorry… what I said there minded me of the time in our last house where the addresses were all muddled and we used to get bags of tatties and all delivered… They left on the doorstep and I thought.so did the neighbours.. .oh how kind, this must be a new service touting for biz by giving freebies.. Meantime the houses at numbers 7, 9 11, 13 Kirk Road were waiting…

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      1. Lol…well let me add to this story and tell you that in the spirit of community that us folks who lived int what was called the Tall Terrace locally, astonished by the generosity of this new firm, were soon gaily swapping each other, things we didn’t eat for things we did. then we were soon gaily making all sorts. We were eating them too…..

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      7. Having a wee smile here, cos it as a line in the Mr’s play.. but he changed to a big girl,’ since it was being said by the waitress who serves Churchill a maggot in his kipper. Alas the girl saying that line was rather big…. but she delivered it tongue in cheek. Just as well.

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  16. Thanks so much for pointing out the eating disorder tendency. My step son w aspbergers is very thin and tall and prefers coffee. At 18, we may have little hope of helping him except to keep a meal habit ourselves when he visits. He “forgets” to eat.
    What if you make a flow chart with him of options? (If not this, then what choices?) He may like the regimen of the irregularity?
    So glad he likes fruits and veggies. We have found nuts and bananas to be a lifesaver.

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  17. If he is enjoying his chocolate and you’re able to give him a healthy diet under today’s circumstances, stick with it. You both have enough to deal with without an ‘expert’ ready to diagnose him with an eating disorder. We all have one, it’s called FOOD!
    Anne’s idea above is good, one that your son could get his teeth into and perhaps come up with some ideas of his own .

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  18. Have you tried local veg boxes? My aunt runs one on the south coast and she has never been busier, milk and more is another (not sure if its up north) riverford?

    We are having the same problem with fresh fruit and veg down here, I am hoping its just a blip

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  20. When Declan was doing his floating box/boat challenge he had a hard time trying to fit into his brothers bathing suit he had gained so much weight. So, over this quarantine, he has been trying to eat healthy. He doesn’t let himself eat the whole box of sweets or whole bag of chips. But you are right – We are on day five from the grocery store and he has eaten all the fruits he enjoys. Tough times!

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  22. You have once again educated me more on autism . I can see eating disorder with it. Plus is there a sensory issue too as certain food has a sensitive feeling to his mouth . Oh I know what I’m trying to say…. I hope you know what I’m trying to say. Looks like a fun Easter hunt. And happy you got to enjoy some candy as well.😊

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  23. It is quite interesting the tie in to eating disorders and autism, it makes a lot of sense especially as you have described your sons needs and the difficulties you are having in our current situation food wise. thank You for your sharing and educating people such as me.

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