D of E with autism

[herecomesthsun]

DC has a recent diagnosis of ASD, is 13 and high functioning, and is very keen on doing d of E bronze.

I am a bit concerned as he has issues with restricted food eating, difficulties especially with inter social interactions, especially if stressed.

I have offered to get proper, fitted walking boots, proper waterproofs, wicking layers etc but DC thinks this is just me being a fussy mum. Of course waterproof trousers may not be needed, but if DC gets cold and wet it could get very difficult for him ( and he won't be easy company then, to put it mildly)

School, according to dc have said that they only need to take a can of alphbetti spaghetti for supper; dc wants only to do what school says; dc has restricted eating patterns and often won't eat a carefully cooked supper.

Anyone got experience of managing this (I thought I'd ask before speaking to the school)

I think it's unlikely that school have said to only take a can of alphabetti spaghetti. Is this what he normally eats?
Of course he will need proper walking boots and waterproof clothing, that should be non negotiable.
Do you have any guidance from school about the necessary equipment?

I'm autistic and did the d of e expeditions.
I got quite into planning menus. You used to be able to get 'spuds n sauce' which were good. Nothing like that now but batchelors or super noodle type stuff can be good.
Far better to try stuff out beforehand.

I always had multiple packs of dry socks. Wool walking socks were my thing. And blister plasters.
Scarpa terra boots are nice and soft.

I found it all easier when I was out on the hills - social stuff, sensory stuff. Interactions seemed a bit easier as they were focused on goals.

Now I still go camping but usually alone.

I sent him for a trial day with snacks and filled rolls - he initially objected to the snacks but now thinks they are a good thing.

He is adamant that school advised a tin of spaghetti for supper.

School will supply tents and stoves. He has also agreed to take a 60+20 Berghaus rucksack, and having difficulty getting him to prepare otherwise.

He also is resisting my suggestions of trying the occasional meal out beforehand to see if he will be able to eat it.

He might have had tinned spaghetti occasionally when he was about 5 but I would never normally buy it. He is very fussy wih food.

DS took a can of baked beans on his first DofE. And brought it home because they didn't have a microwave to cook them in I think he survived on snacks as he didn't want to eat anyone else's cooking or out of a saucepan anyone else had washed up. He dropped out after that. However a friend's son with ASD has done Bronze and Silver and is an Explorer Scout constantly camping and eating all sorts.

You are the best person to know what your son will or won't be able to manage. How long is d of e? Is it 2 nights? If he doesn't eat at all for those 2 days will that upset him or will he be ok? Will he still drink plenty? Is he likely to be so awful socially that he is a danger to himself or the others? Have school sent out a kit list yet? Is he able to get his head around the fact that school suggesting a single tin of spaghetti for several days isn't enough food and doesn't make sense so either he misheard or they made a mistake?

My son has a whole cascade of issues and everytime a school event comes up I have to work out whether the benefits to him in terms of confidence, independence and self esteem outweigh the discomforts like, not sleeping for a few days, not wearing the right clothing no washing or teeth brushing etc.

I found lowering my normal expectations of what is ok/ normal usually helps me to see the situation a bit more clearly.

You will make the right decision.

I think it will be 2 days and 1 night, in May.

We haven't had a kit list yet.

I think we probably need to get the boots and wear them in, which we could do over the Easter hols.

As long as he drinks and has some dry warm clothes to put on if he needs to then I suspect he will get through it and may even surprise you. My son always does much more and copes better when I am not with him! Good plan with the boots and wearing them in.

It is Compulsory to carry waterproof trousers locally, for DoE, doesn't mean those trousers ever get worn (!!).

The stated canned food was an exemplar not the only choice ever possible.

DoE is meant to be challenging, out of their comfort zones. The kids in reality eat the most basic food you can imagine. Lunch they made at home on day1. Plain pasta with maybe (maybe) a cooked chopped carrot for supper, porridge with sugar, big bags of harribos for lunch. on 2nd day (energy bars, maybe an apple). I think middle DS had pot noodles for supper.

I'm going to wager my DS is fussier about food than yours & I've no qualms about DS on DoE (practice in 4 weeks). Go on, give us the list of possible foods yours could eat for evening meal. Mine will have something like the plain pasta with some cooked carrot. He wouldn't touch canned spaghetti or baked beans, either.

Are you saying your DS won't wear layered clothing at all?

They do need to have good rapport with the other kids. DS seems to be managing (in with a group of mostly girls). He met them after he signed up for DoE.

Mine is saying he will not take anything but the can of spaghetti for evening meal, even though he wouldn't normally eat this. He is not very interested in discussing the options. I have offered to support him in getting pouches or sachets of stuff, and letting him tryout options at home for supper. where he can eat something else if it doesn't turn out well, but he doesn't want to do that.

I think he doesn't want to do things differently from what he thinks the other guys will be doing.

It's probably a misunderstanding based on something someone said in a throwaway type way.

Our school once took us to the supermarket and talked us through 3 days of food. That was really helpful.

Would the school send you a list of suggested food to look over with him?

I don't tend to take tins as they are heavy, but I'm a gram-counting weirdo and always have been.

I've survived a music festival on a tube of primula and box of ritz crackers, and managed for a few days on cereal bars when I've had to.

Surely the school will support the group through planning the meal? I remember that being part of the experience.

I'd say you can advise trying the food beforehand, but if he really won't then give it a go and be ready to pick him up if not coping.

Would he be more willing to try the suggested food if he cooked it in the garden on a camping stove? So it is more associated with practice for the D of E?

I suggest waiting for the kit list before worrying about this.
I can't imagine there is only going to be one can of spaghetti on there for 2 days.
Presumably when the kit list arrives your DS will take cereal bars etc if they are on the list?
If you are seriously worried about the food list - speak to the teacher organising the event and tell them you don't think your will eat unless the food is specific to him and also prescribed by the school.

I would be talking to whoever is organising it at school. Part of the training should be discussing different food options and how to cook them whilst on camp. If he is going to take everything school says literally ask them to give a list and make it clear they can choose options they like. Also maybe ask school to suggest trying stuff at home first.

My DD is currently doing Bronze too.
Check out the DoE website. There's lots of information on it.
DD has had a training weekend. Their kit is fully checked before they go, they must have what's on the list. It's basically 2 full days hiking and map reading (6 hours per day) and an overnight camp. All kit and food must be carried by the team you're in.
Get enough calories in. Don't worry too much about perfect nutrition!
If your DS won't listen to you, leave it to the instructors. Part of the experience is learning by doing.

I'm autistic and did D of E. Like a PP I still enjoy hiking and camping.

When I did it you had to do a "three course" meal using the trangea stove so it was usually cup-a-soup, followed by super noodles, followed by instant custard. Tins aren't a great idea as they're so heavy. My biggest difficulty was working collaboratively with the rest of the group who couldn't read a map and thought it was funny when we got lost.

I think get the school on side early. See if they’ll send a kit list early so he can get used to what he will need, like boots, waterproofs etc, and any support they can give around meal planning so he doesn’t turn into a tin of alphabetty spaghetti from eating nothing but that! Tins are heavy to carry anyway, so not the best idea - but maybe if he has a list from school that will help him to move away from the spaghetti fixation. Although if that is all he eats - could be worse.

Good luck! I really hope your DS enjoys it

Mine managed bronze (and also many Scout camps) with autism and restricted eating. Somehow he just muddled through with snacks (cereal bars etc) and eating a bit of the shared food. In fact he started eating one or two things he'd never eaten at home. Never cracked potato-eating though.

Boots, good socks (two thin pairs plus spares), blister plasters, waterproofs (DS can only tolerate the more breathable type, not the sweaty cagoule ones), all non-negotiable. He's never to my knowledge actually worn waterproof trousers, but we buy the thin, stretchy jogging bottoms, plus football type shirts and a fleece, all stay light and dry easily.

@herecomesthsun

He also is resisting my suggestions of trying the occasional meal out beforehand to see if he will be able to eat it.

He might have had tinned spaghetti occasionally when he was about 5 but I would never normally buy it. He is very fussy wih food.

Maybe this is the moment when he gets over being a fussy eater, because he so badly wants to go on DoE hikes and trips?

I think you should step back and let him make some decisions about what food to take. Even if he gets it wrong. That's how all kids learn and grow up.

@savehannah

I would be talking to whoever is organising it at school. Part of the training should be discussing different food options and how to cook them whilst on camp. If he is going to take everything school says literally ask them to give a list and make it clear they can choose options they like. Also maybe ask school to suggest trying stuff at home first.

If needs be once it's arranged more, I'd plan what he needs to take (rather than what he thinks he needs), type it up and ask the school to hand it out to him - if he's fixated on the throwaway alphabet spaghetti cos someone at school has said it, then the stuff you're planning to provide him with anyway being requested by school might just be the easiest route through it.

A tin of spaghetti is too heavy anyway.

My dc went to.an outside scouts activity and the grass was wet dc complained for 1h about how wet feet were...
I agree with pp that school could help with list of.more possibilities. Kids will likely be very hungry as you walk alllll day!

We often have children with ASD on the DofE expeditions and have had a member of staff walk with a group for support before to allow a student with an EHCp to take part, though they didn't help with any of the navigation etc.

I would definitely have a conversation/email communication with whoever is running it if you feel additional support is needed to ensure this is a positive experience for everyone.

re having a restricted diet, it's an autism symptom, so there's a bit more to it than just "growing up"

I am thinking I might need to discuss his autism symptoms again with school.

I read the other thread on D of E, and of course the school might be deluged with parental concerns.

So I am listening to what you all say and considering my approach [smile[

If it works for DC , let them carry the tin of spaghetti but make sure they take lots of high calorie snacks as well. They can live on those (as do many DofE kids) if, as I expect, not everyone is having spaghetti for dinner. Full waterproofs are absolutely essential for everyone - your DC would be the odd one out without these.

My DS did bronze DofE through school. Fortunately his key worker for his SEN was also one of the DofE leaders who actually encouraged him to enrol in the scheme. They had weekly planning sessions before the practice expedition in which they discussed food and how they would divide up the carrying of the equipment between each group. There is a kit list and they will need clothing for all weather. Comfortable boots are a must so would suggest getting them sooner rather than later to wear them in and to get him used to the feeling of boots if it's not something he's used to.
Food wise, DS took packets of pasta/sauce type things that are light to carry and quick to heat up. Depends if they are to plan joint meals for each group of say 4 or take individual food - the latter not really bring practical if they are sharing 1 stove between a few of them and one pan!
I would suggest you contact the course leader to talk it through so that you can plan for your DS's particular needs and prepare him in advance.
I really hope he is able to do it as I'm sure he will benefit - I know my DS did, not only from the expedition but from the volunteering too (he worked in the local library every Saturday morning for 3 months which really helped his confidence).