newbie

[Joesmum999]

Hi my son is an adult with autism and was diagnosed with diabetes type 2 3 days ago. I feel there is so much information for him to process that its a bit overload.
Any tips on how to approach this in small steps as he is reluctant to change his mostly unhealthy way of eating - mostly due to autistic traits as he eats the same things repeatedly as part of his routine and we need to address this now with healthier options for him.
Anybody else had this problem when newly diagnosed and how do i approach this?
Many thanks
Joes mum

 

[bulkbiker]

Hi and welcome @Joesmum999
What does your son like to eat? We all have different definitions of "unhealthy" and "healthy" when talking about food so it's not always clear.

 

[Joesmum999]

Hi bulk biker and thanks for the welcome,
My son eats what i call beige food. pies, pastries, chips, white bread, hash browns, chicken nuggets, processed chicken burgers. he also has a very sweet tooth and likes white chocolate and cake. He is very overweight at 19 stone and has high tri glycerides and cholesterol too.
He will eat a chilli if i make it which i do weekly and perhaps a chicken stir fry but being autistic he is reluctant to change to any healthy options such as brown bread, more vegetables, etc. i feel i will have to go very slowly with this. he is due to start on metformin and we are just waiting on the prescription. He can drink 4 litres of milk daily and approx another 3 litres of orange squash.

 

[bulkbiker]

Ouch.. as a T2 his problem is with processing carbohydrates so most of what he eats seems to be pretty high carb.

The colour is pretty irrelevant so brown alternatives have pretty similar amounts of carbs as white.

Do you know what his HbA1c was that led to his T2 diagnosis?
That can give an indication of how drastic dietary changes might need to be.

 

[trophywench]

Whilst the colour of food may be irrelevant to anyone without autism - it's become very apparent to me since our second youngest great grandson was born 3 years ago, non verbal and since they lived nowhere near us when he was born - neither he nor my husband has ever been able to give him a hug, let alone a kiss, that it can be of overwhelming relevance to folk with autism. They very very often adopt a beige diet for the simple reason they know they can rely on the foods they allow it to encompass and also know they can bear eating them - cos it's as much to do with texture in the mouth, as anything else.

I'm no expert by any stretch of the imagination, but I suppose it's slowly slowly like trying the '50/50' bread for starters. Just as much in the way of carbs - but it's beige rather than white, then gradually let the beige get a tan, so go a bit darker .......

 

[Callista]

I ask this with great trepidation, but what would happen if your son became hungry? ie, if you made food 'unavailable' to him at the time he usually eats it? I ask because I wonder whether if he gets 'really' hungry (having been 'deprived' of food at this usual time by, say, an hour) he would be more open to eating something healthier (as in, if that were all that was on offer).

I'm not trying to be cruel, but in this particular situation of non-neuro-typical behaviour, I wonder whether hitting a more 'physiological' motivation (ie, letting him become hungrier) might helpfully drive him towards a better diet?

Of course, what I ask might be completely impossible, as in, delaying his food intake (change in his routine) might kick off huge distress in him? (Could you 'delay' gradually over days, I wonder?)

Hunger, and the physiological need for food, can be a huge, huge driver (is there any stronger, other than thirst and the need to breathe?) of our behaviour and so 'might' (???) supersede anything else, even in autists???????

Apologies if this is completely out of the question.

 

[Joesmum999]

Ouch.. as a T2 his problem is with processing carbohydrates so most of what he eats seems to be pretty high carb.

The colour is pretty irrelevant so brown alternatives have pretty similar amounts of carbs as white.

Do you know what his HbA1c was that led to his T2 diagnosis?
That can give an indication of how drastic dietary changes might need to be.

Joes HbA1c was 113

 

[Joesmum999]

I ask this with great trepidation, but what would happen if your son became hungry? ie, if you made food 'unavailable' to him at the time he usually eats it? I ask because I wonder whether if he gets 'really' hungry (having been 'deprived' of food at this usual time by, say, an hour) he would be more open to eating something healthier (as in, if that were all that was on offer).

I'm not trying to be cruel, but in this particular situation of non-neuro-typical behaviour, I wonder whether hitting a more 'physiological' motivation (ie, letting him become hungrier) might helpfully drive him towards a better diet?

Of course, what I ask might be completely impossible, as in, delaying his food intake (change in his routine) might kick off huge distress in him? (Could you 'delay' gradually over days, I wonder?)

Hunger, and the physiological need for food, can be a huge, huge driver (is there any stronger, other than thirst and the need to breathe?) of our behaviour and so 'might' (???) supersede anything else, even in autists???????

if this is completely out of the question.

Hi Callista,
he is pretty fixated on what he buys for food and what he eats. Very occasionally i have tried to introduce different foods or meals to him. If he becomes very hungry his mood changes and he becomes anxious and can become distressed. He is trying to understand what being diabetic means and accepts that there may be compromises and food is a big driver for him so i am taking this very slowly with him. too much information or changes too soon and he wont cooperate at all.
hope this makes sense. He has set routines and eats from the same plate and wont use a different one so in some ways is quite rigid due to his autism so discovering his diagnosis is a massive issue for him to process.

 

[Joesmum999]

Whilst the colour of food may be irrelevant to anyone without autism - it's become very apparent to me since our second youngest great grandson was born 3 years ago, non verbal and since they lived nowhere near us when he was born - neither he nor my husband has ever been able to give him a hug, let alone a kiss, that it can be of overwhelming relevance to folk with autism. They very very often adopt a beige diet for the simple reason they know they can rely on the foods they allow it to encompass and also know they can bear eating them - cos it's as much to do with texture in the mouth, as anything else.

I'm no expert by any stretch of the imagination, but I suppose it's slowly slowly like trying the '50/50' bread for starters. Just as much in the way of carbs - but it's beige rather than white, then gradually let the beige get a tan, so go a bit darker .......

Hi jenny , thanks so much for your response. Joe will not be touched or hugged unless it is on his terms. I agree texture is an important factor for neuro divergent individuals. I agree slowly, slowly is the way to go.

 

[trophywench]

Our eldest daughter, ie little un's maternal grandma, nor his maternal grandad, ever try to kiss or cuddle him, either they say hello directly and offer him a hand gently - which he either takes and presses it to his face for a moment or two indicating, ah I know you and you're OK - or shoves it away PDQ. That's it with little kids - you do get the honest truth from them, whoever they are!

 

[Lucyr]

I ask this with great trepidation, but what would happen if your son became hungry? ie, if you made food 'unavailable' to him at the time he usually eats it? I ask because I wonder whether if he gets 'really' hungry (having been 'deprived' of food at this usual time by, say, an hour) he would be more open to eating something healthier (as in, if that were all that was on offer).

I'm not trying to be cruel, but in this particular situation of non-neuro-typical behaviour, I wonder whether hitting a more 'physiological' motivation (ie, letting him become hungrier) might helpfully drive him towards a better diet?

Of course, what I ask might be completely impossible, as in, delaying his food intake (change in his routine) might kick off huge distress in him? (Could you 'delay' gradually over days, I wonder?)

Hunger, and the physiological need for food, can be a huge, huge driver (is there any stronger, other than thirst and the need to breathe?) of our behaviour and so 'might' (???) supersede anything else, even in autists???????

Apologies if this is completely out of the question.

This is totally not how autism works and I’m shocked someone would suggest this. As dietary changes will need to be made gradually, it may be that he needs more medication sooner than other people to manage his blood sugars. It’s good he’s starting on metformin soon, it would also be good to increase exercise if he can as that will help his blood sugars.

For food, I’d start with the same foods he eats now, but reducing the portion size of carbohydrates slightly, and adding some small portions of veg and increasing any proteins he can eat. Things like chicken can often be plain enough for autistic people with sensory issues to like as a protein and if he likes chicken nuggets, perhaps some plain roast chicken would be a reasonable start to expanding his acceptable foods.I’d also suggest reducing the milk and going more for sugar free squash. 4 litres of milk a day is a lot of calories and carbs.

 

[Callista]

This is totally not how autism works and I’m shocked someone would suggest this
**

My point was, as I sought to explain, was to find something 'beyond' autism, as in, what are drivers for ALL humans (all animals in fact), that might indicate a route by which the necessary dietary changes could be introduced.

Like it or not, irrespective of how our brains are wired, physiology 'controls' us - we HAVE to find air to breath, we HAVE to find water to drink, we HAVE to find food to eat - which was why I speculated whether those primary drivers could be channelled accordingly.

 

[Lucyr]

This is totally not how autism works and I’m shocked someone would suggest this
**

My point was, as I sought to explain, was to find something 'beyond' autism, as in, what are drivers for ALL humans (all animals in fact), that might indicate a route by which the necessary dietary changes could be introduced.

Like it or not, irrespective of how our brains are wired, physiology 'controls' us - we HAVE to find air to breath, we HAVE to find water to drink, we HAVE to find food to eat - which was why I speculated whether those primary drivers could be channelled accordingly.

I bet if an adult male came seeking advice on helping their newly diagnosed wife with food phobias to come to terms with their diabetes, then you wouldn’t suggest he made sure all food except healthy food was unavailable to their wife to force them to face their phobias. Yet that’s exactly what you’re saying someone should do to their autistic son.

 

[Callista]

If a strategy works it should be considered. Possibly, yes, considered and rejected, but it is sensible to try and think 'outside the box'.

We will probably have to agree to disagree on this.

 

[Lucyr]

If a strategy works it should be considered. Possibly, yes, considered and rejected, but it is sensible to try and think 'outside the box'.

We will probably have to agree to disagree on this.

I really can’t agree to just ignore this completely inappropriate suggestion

 

[everydayupsanddowns]

Hope you are able to find ways to support your son to make small, positive changes to his menu in a way that he can accept and even perhaps enjoy?

We have a number of neuro atypical and divergent members on the forum who have been able to make adjustments to their ways of eating. Some have even made it into something of an engaging and interesting 'project' to find ways of preparing and choosing lower-carbohydrate foods that satisfy their sensory needs while being kinder on their BG levels.

It's a tricky balancing act for sure - but he isn't alone in having to face it, and others have been able to find a way through the complexities of balancing both conditions, so there is hope. 🙂

 

[Callista]

I really can’t agree to just ignore this completely inappropriate suggestion
**

You haven't ignored it - you've stated your objection clearly.

As I say, we'll have to agree to differ - or perhaps disagree. Clearly we differ!

 

[Lucyr]

As I say, we'll have to agree to differ - or perhaps disagree. Clearly we differ!

We differ greatly. I’m autistic and it’s really important to me that autistic adults are treated as adults, and supported to make their own informed decisions and work on changes they want to make in a way that is comfortable for them. Whereas you’d rather people prevented them making their own choices…

 

[Drummer]

Hi bulk biker and thanks for the welcome,
My son eats what i call beige food. pies, pastries, chips, white bread, hash browns, chicken nuggets, processed chicken burgers. he also has a very sweet tooth and likes white chocolate and cake. He is very overweight at 19 stone and has high tri glycerides and cholesterol too.
He will eat a chilli if i make it which i do weekly and perhaps a chicken stir fry but being autistic he is reluctant to change to any healthy options such as brown bread, more vegetables, etc. i feel i will have to go very slowly with this. he is due to start on metformin and we are just waiting on the prescription. He can drink 4 litres of milk daily and approx another 3 litres of orange squash.

The chicken stir fry should be OK - as long as the ingredients don't include high carb choices.
Low carb bread is an option, though it would be easiest to make it at home and cook it as bread rolls to control the amount eaten,
Cakes can be made low carb - there are some good recipes on the suagarfreelondoner website.
Cauliflower cheese with just those ingredients might be an option.
I'm afraid that brown bread is not a healthy option, and not every vegetable is a good choice.

Metformin can have some rather unpleasant side effects, and I would not take it again. Do warn your son of what might well happen after taking the tablet and ensure he stays at home until his reaction to it is known - some people can take it and have no reaction, some just can't at all.

 

[Joesmum999]

This is totally not how autism works and I’m shocked someone would suggest this. As dietary changes will need to be made gradually, it may be that he needs more medication sooner than other people to manage his blood sugars. It’s good he’s starting on metformin soon, it would also be good to increase exercise if he can as that will help his blood sugars.

For food, I’d start with the same foods he eats now, but reducing the portion size of carbohydrates slightly, and adding some small portions of veg and increasing any proteins he can eat. Things like chicken can often be plain enough for autistic people with sensory issues to like as a protein and if he likes chicken nuggets, perhaps some plain roast chicken would be a reasonable start to expanding his acceptable foods.I’d also suggest reducing the milk and going more for sugar free squash. 4 litres of milk a day is a lot of calories and carbs.

thank you so much for your response and advice. It really is slowly slowly and changing things very gradually. Joe loves orange squash to perhaps he can drink more of that sugar free rather than the 4 litres of milk. thanks again