Type 1 and Aspergers

Vampix

Member
Messages
7
Hi, i joined here because my 12 year old son is newly diagnosed with type 1 Diabetes. He also suffers from Aspergers Syndrome, a high functioning form of Autism. He's actually a very bright lad, very much into designing computer games, and he's learning how to do this. He is also very fascinated by his Diabetes and wants to be involved in finding possible cures for Diabetes sufferers. Many people with Aspergers have very high IQ's and can exhibit a higher level of intelligence than others of his age. He has very focussed ways of learning things he is interested in. For instance, Einstein was thought to suffer from Aspergers! My son Ryan is taking part now as a research subject at Coventry's University Hospital, and he's is amazingly intelligent, and eager to do something to help other Diabetics.

The downsides to Aspergers can be a challenge. Sporadic outbursts of emotion (sometimes insane happiness, sometimes almost suicidal sadness and often for no apparent reason), difficulty handling general emotions and empathising towards others around him. He can sit and discuss technically advanced theories with adults, but this can set him apart from many others of his own age. He also needs constant prompting to take his insulin, count his carbs, check his blood glucose levels... Thats just being a 12 year old though, lol.

He's one in a million, and his mum and me feel gutted for him that he has to cope with a psychological condition and now a physical condition too. The Aspergers already made him feel so very different and alone, the Diabetes is just another thing that stops Ryan from being the "normal" kid that fits in everywhere. He is however coping with most aspects of it far better than we, his parents could ever have at 12 years old!

So, i'm just wondering, is there anyone else out there who suffers from Diabetes and Aspergers?
 

noblehead

Guru
Retired Moderator
Messages
23,618
Type of diabetes
Type 1
Treatment type
Pump
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Disrespectful people
It sounds like you have fine young man there Vampix, I'll 'bump' your post up to the top of the forum in the hope that someone may help you.

Welcome to the forum btw :)
 

Fallenstar

Well-Known Member
Messages
546
Hi Vampix

You have a special boy there, who will see things and have insights that most of us mere mortals can only dream of, so cherish him. It is a gift in my mind but does have it's challenges. He will love his routines and ritual, so Diabetes involves a lot of those, he will have graphs and spreadsheets on all his tests soon I'm sure, Self care can be very teachable to ASD kids...it's just when we need them to take their foot off the Gas a bit with it and maybe deviate from things that are ritualised that it can cause ructions :lol: He will handle it all so well. Hey and about being the normal kid and fitting in, who wants to fit in, now thats boring!! Different is where it's at in my book , far more interesting.

Take a look into Paul Shattock, I know the Gluten and Casein free approach is not for all, but I have seen some amazing results, a lot of Type 1 Diabetics including myself are Coeliac, I feel strongly about the Brain and Gut aspect in treating symptoms of ASD, it helps in taking off the rough edges. Research it and see if you think it may help your son.

Enjoy your special Son.
 
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Vampix

Member
Messages
7
Thanks very much both of you. Yes, Aspergers is often looked upon as a sort of gift. He looks at things from a different perspective than most people, but when he explains why, you can often see brilliance in his unique methods of problem solving and understanding.

He started writing detailed and really interesting essays on his theories of how to cure diabetes just 3 days after he was diagnosed! He was in hospital for a week after diagnosis because his blood sugar was at 46! The week in hospital was to stabilise him, and to indroduce us all to diabetes and the responsibilities it involved for us all as a family.

Two of the nurses sat and read his theories and just came back to us gobsmacked that he had such a profound understanding of what Diabetes is. His book of theories was then shown to a research professor who then invited him to become involved in a large current Diabetes study.

I have no doubt that our lad is destined for great things, and yes, being different can be great, but it can also be lonely when childrens social structures rely 99% on them fitting in to be deemed as acceptable. I just want him to have an enjoyable childhood, the bit he has left of course.

Thanks for the advice on Gluten and Casein free plans... We will look into this. I do know we tried a diet based approach some years ago in helping to control the rollercoaster of emotions he tends to suffer, but after trying low gluten, dairy free, caffiene free type diet plans, we found the best thing he responded to was having a food rota. It wasn't so important what he ate (this was pre-diabetes), but he responded greatly to having a structured plan to follow rather than "winging it".

Now we have found that similar rota style planning is useful in carb control part of his daily food intake, he is enjoying helping me work out new rotas for him. Also, we can easily work out the next days school lunchtime dose of Novorapid based on the lunch we have planned for him.

In as far as that, the structured planned approach is helping with his Aspergers and his Diabetes :)
 

apothecary

Member
Messages
7
Dislikes
western diet and the "food" industry. ignorance (others AND mine!)
Hi Vampix and Ryan - I have just joined today :) I have T1 since aged 8 and I have a lot of creative and "clever" people in the family - which equates to we all struggle to differing levels socially and with the mundane things in life! I have recently been diagnosed with Asperger's but in fact I have known that since I left home. My feeling is that we live in a world of disability dominated by either intentionally or non intentionally making some individuals feel they are different and outside the "mainstream".

I wish we could live in a world which treated everyone as special and also recognised everyone's child as having " special educational needs ". It is interesting how with the help of hindsight I remember how people reacted to my diabetes when I was diagnosed and how it is so different to when you have a diagnosis of Asperger's.

I am sure you will have been through a lot of hard work, worry and are aware how this might continue - good luck - wish I could help out with Ryan's special talents hope he carries on with this interest and we may eventually learn something new - how often it is that we can't see for looking! :thumbup: - jon
 

palm_tree

Member
Messages
20
Type of diabetes
Type 1
Hello!

I am a 44 year old male who has both Asperger's Syndrome and Type 1 Diabetes. Asperger's I have had from birth although I was only diagnosed two years ago. Diabetes I have had for 15 years.

As someone with Asperger's I love the predictability of routines, rules, procedures. I don't like surprises, sudden changes or questions that can't be fully answered. I think thats why I find managing my diabetes so difficult. I take a scientific or logical approach to adjusting my insulin and food intake but the outcomes are never totally predictable. For example if I knew that every time I ate a cheese sandwich and a packet of crisps and took 14 units of Insulin that my blood sugar would rise by a certain amount things would be a lot easier. In real life my blood sugar levels depend on exercise, time of day, weather, previous meals, emotional state and many more factors. That I find very frustrating and at times makes me give up monitoring my blood sugar levels.

I do realise the importance of keeping my blood sugar regulated but having Asperger's means if I do something I want it to be perfect. Its just not possible to reach the level of perfection in blood sugar control that I demand from myself. For example I get upset if Im filling out my blood sugar diary and I have to record a very high result, or I make a mistake and write in the wrong space. That makes me want to give up too.

I dont know if this is of any help to you. I would advise you to try and get as much support as you can find, from your GP, schools, the National Autistic Society, NHS, Social Services and from any organisations that offer support in your local authority. I have found that the only way to get any help is through constant asking/begging/nagging, you just have to keep trying until someone acknowledges your right to support.

Best wishes

Philip
 
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jschable

Newbie
Messages
1
Type of diabetes
Family member
Treatment type
Insulin
Hi, i joined here because my 12 year old son is newly diagnosed with type 1 Diabetes. He also suffers from Aspergers Syndrome, a high functioning form of Autism. He's actually a very bright lad, very much into designing computer games, and he's learning how to do this. He is also very fascinated by his Diabetes and wants to be involved in finding possible cures for Diabetes sufferers. Many people with Aspergers have very high IQ's and can exhibit a higher level of intelligence than others of his age. He has very focussed ways of learning things he is interested in. For instance, Einstein was thought to suffer from Aspergers! My son Ryan is taking part now as a research subject at Coventry's University Hospital, and he's is amazingly intelligent, and eager to do something to help other Diabetics.

The downsides to Aspergers can be a challenge. Sporadic outbursts of emotion (sometimes insane happiness, sometimes almost suicidal sadness and often for no apparent reason), difficulty handling general emotions and empathising towards others around him. He can sit and discuss technically advanced theories with adults, but this can set him apart from many others of his own age. He also needs constant prompting to take his insulin, count his carbs, check his blood glucose levels... Thats just being a 12 year old though, lol.

He's one in a million, and his mum and me feel gutted for him that he has to cope with a psychological condition and now a physical condition too. The Aspergers already made him feel so very different and alone, the Diabetes is just another thing that stops Ryan from being the "normal" kid that fits in everywhere. He is however coping with most aspects of it far better than we, his parents could ever have at 12 years old!

So, i'm just wondering, is there anyone else out there who suffers from Diabetes and Aspergers?

Wow, I have just joined out of desperation, as I felt really isolated in my situation. I am from South Africa. My son and husband were diagnosed with aspergers last year and in May of this year my 38 year old husband was diagnosed with type 1 diabetes. I honestly am questioning my own sanity at this point. My husbands mood swings have become more extreme and I really need some emotional support.
 
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DanPalmer

Newbie
Messages
2
I’m 41 and am on the waiting list for an ASD assessment. I think I have Aspergers. I’ve been a Type 1 Diabetic since I was 12.
 

Seacrow

Well-Known Member
Messages
496
Type of diabetes
LADA
Can I ask why you want an official assessment? I've been told by three health professionals specializing in the autistic spectrum that they are sure I have Asperger's, but I don't need an official diagnosis.

My point of view is it would have been useful at any age up to 20, but at 45 what is another label going to do for me. I already have have all the processes and tricks to deal with people that I am ever going to learn. Everyone I interact with knows I am not totally 'normal' and they get to like it or lump it. I have accepted I am different. Is a new 'explanatory' label going to make any difference?
 

hscarangella

Newbie
Messages
3
Type of diabetes
Type 1
Treatment type
Tablets (oral)
Hi, i joined here because my 12 year old son is newly diagnosed with type 1 Diabetes. He also suffers from Aspergers Syndrome, a high functioning form of Autism. He's actually a very bright lad, very much into designing computer games, and he's learning how to do this. He is also very fascinated by his Diabetes and wants to be involved in finding possible cures for Diabetes sufferers. Many people with Aspergers have very high IQ's and can exhibit a higher level of intelligence than others of his age. He has very focussed ways of learning things he is interested in. For instance, Einstein was thought to suffer from Aspergers! My son Ryan is taking part now as a research subject at Coventry's University Hospital, and he's is amazingly intelligent, and eager to do something to help other Diabetics.

The downsides to Aspergers can be a challenge. Sporadic outbursts of emotion (sometimes insane happiness, sometimes almost suicidal sadness and often for no apparent reason), difficulty handling general emotions and empathising towards others around him. He can sit and discuss technically advanced theories with adults, but this can set him apart from many others of his own age. He also needs constant prompting to take his insulin, count his carbs, check his blood glucose levels... Thats just being a 12 year old though, lol.

He's one in a million, and his mum and me feel gutted for him that he has to cope with a psychological condition and now a physical condition too. The Aspergers already made him feel so very different and alone, the Diabetes is just another thing that stops Ryan from being the "normal" kid that fits in everywhere. He is however coping with most aspects of it far better than we, his parents could ever have at 12 years old!

So, i'm just wondering, is there anyone else out there who suffers from Diabetes and Aspergers?
 

hscarangella

Newbie
Messages
3
Type of diabetes
Type 1
Treatment type
Tablets (oral)
My grandson who is now 19 was just diagnosed with Diabetes 1.5, which is Adult onset Diabetes 1. He is currently on Metforin, but that is expected to change and it looks as though it is inevitable he will be having to go on insulin. He has high functioning Aspergers and has always had a eating problem whereby he only eats 7 things, all carbs, so this is a major problem. He just cannot even stick a piece of any veggie in his mouth, we've tried everything. We are all besides ourselves and don't know what the future might hold for him. He is currently a sophomore at college and this really side-tracked him. It is very difficult for his mom as he is away at school and she can't help him that much from afar. Due to his aspergers, he has no friends to speak of who he can confide in and suffers from anxiety and depression. We are still at the very beginning of this journey with him and its scary. Dealing with the Aspergers was not easy either as it was not diagnosed until he was 11.
 
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Diakat

Expert
Retired Moderator
Messages
5,591
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
The smell of cigars
Hi @hscarangella
As he is LADA he will need insulin eventually- this will actually make the carb eating side of things easier providing he doses correctly.
His future does not have to be bleak.