Diabetic and autistic

[douglas99]

I'll start of by saying I'm not T1, and have no experience of it, personally I'm type 2, and follow a low GI/GL diet.

But, having said that, a friend shared this on my facebook only today.

http://naturalauthority.com/boy-recovers-from-autism-after-going-gluten-free/

It suggests a gluten-free casein-free ketogenic diet, in later childhood, of which I have no experience either, but I will post it up in the hope others can comment on it, or you can look a bit deeper into it as a starting point.
It could be entirely irrelevant, in which case I'll apologise now, and the 'recovers' in the title isn't a word I would normally re post without very good proof, which I haven't any of, or it could possibly be something that may help?

Again, I must stress I have absolutely no experience of the topic, children, or the post I'm linking to.

 

[BekkiG74]

Thank you so much for posting this Douglas , it's always good to read new things and it's very much appreciated

 

[BekkiG74]

Oh thank you so much emmysmum for sharing....it is a nightmare and I'm so glad I'm not the only one in this situation , how long has your daughter been diagnosed t1 for?
Hope things are going well for you guys

 

[ronialive]

I was just wondering if there are any other parents on here that have children that are diabetic and also autistic.

My little girl is autistic and was diagnosed a few weeks ago with T1. The DN seems to think that autistic children in many cases cope better than those without autism , so I was just wondering if other parents have found this too?

Bex

Hi my son is autistic but not diabetic- I am the diabetic.
However with my son no matter what it was he just responded well to being given the facts and not being protected. He always knew when I wasn't truthful.
I struggled to get a diagnosis for him- he was actually 14 although I knew from a baby and responded to him as though he was.

 

[ronialive]

We wouldn't be good mums if we didn't worry about every detail though!

I will apply I just find the form very daunting!

I've only had to check once in the night for hypos but have a feeling that may change as they are coming thick and fast at the moment :-( x

a simple night check is just to put your hand into the small of the back. If it is very sweaty then they are low.

 

[ferretlives]

Hi Bekki

I don't know who told you that kids with autism deal better with having diabetes but I was told the opposite and so far it has proven to be the case! The problem is that a lot of people who don't have 24 hours a day experience of autism constantly fail to realise that every kid with autism is different.

When my son was diagnosed (a year after getting his asd diagnosis) his nurse said that there may be a connection between autism and diabetes as they had had a run of diagnoses recently amongst kids with existing diagnoses of asd. So there could be something connected there or a preposition to the conditions. Both can be caused by autoimmune problems.

At first the amounts of insulin he needed weren't too high and he needed injections only in the morning, evening and bedtime but after a couple of years his tolerance changed and he needed a lot more insulin and injections during the day so (because he can't inject himself and wouldn't let a teaching assistant or school nurse do it) he had to be taken out of school and homeschooled.

Oh the joys of diabetes, and autism!

Stu

 

[Sunshine76]

Hi
My daughter turned 16 a couple of weeks ago and was diagnosed with type 1 diabetes today, she was diagnosed with Aspergers last July after years & years of trying to get someone to listen and stop making me feel as though something terrible was going on at home because she hasn't ever really communicated at school. She's currently doing GCSEs and I feel so bad for her as she's having so much to deal with at the moment, just feels like one thing after another! I feel so overwhelmed with everything at the moment but after reading all your posts I'm sure we'll get to grips with it.

 

[Smitten73]

I'm slightly different with my children. I have two, one daughter 19 with Aspergers and a son 16 with T1 diabetes. X

 

[BekkiG74]

@ferretlives I think I was told that autism and diabetes can go well in respect that generally autistic kids like routine and that everything has to be just so. For us at the moment things are ok ish well until we are in full meltdown over something then trying to test or inject become mission impossible!!

Do you find things easier now you are home schooling?

Bex

 

[ferretlives]

@ferretlives I think I was told that autism and diabetes can go well in respect that generally autistic kids like routine and that everything has to be just so. For us at the moment things are ok ish well until we are in full meltdown over something then trying to test or inject become mission impossible!!

Do you find things easier now you are home schooling?

Bex

Hi Bex

You would think they would like the routine but my son doesn't! He likes routines sometimes and in his own way but doesn't like just any old kind. He's very awkward like that! You get quite a lot of the "I wish I didn't have diabetes" whenever the subject of chocolate or sweets comes up but to be honest he gets quite a lot so it isn't as if he is denied them.

It can be difficult at times because he is very set in his ways with food and sometimes you have to constantly update the amount in your head that he has eaten, carbs wise (do you carb count?) and then sometimes he will decide he doesn't like something after all and leaves it so again you have to amend the amount. He has a terrible short term memory too so he will do a test and then instantly forget what his level is and you have to tell him to go and look at the meter again.

Things are easier in a lot of respects now he is homeschooled, there's no pressure over times for things, he has less anxiety and we don't have to worry about expensive hotels etc during school holidays, school uniforms and also non-school uniform days, getting everyone at the school on our side etc. He would often say that supply or student teachers would ask him to wait to do a test cos there were only five minutes left until break but then they denied it when we asked about it plus many more daft little things that shouldn't really have been problems.

The only downside is now that he is high school age the level he needs to be taught may be beyond me plus it is harder to find appropriate material online. He misses friends too so has expressed an interest in going back to school in September but I may have to go with him as his t.a. and injector!

I would recommend homeschooling to anyone though.

Stu

 

[nmr1991]

I realise this is on children and parents forum but it should apply to me just as much.

I was diagnosed with HFA / AS at age of 7 and with type 1 at age 19 during college, it started off well although still using injections, I can't say it has gotten easy over the years, what with depression and anxiety, most days I don't see why I should do these things like blood testing so I rely on how i feel and sometimes miss injections altogether sometimes deliberately sometimes I forget. Before diabetes though my memory was way better - that might have been a trait of AS - but it started degrading as soon as my control of diabetes worsened, started with 6% hbA1c and went up to 12% during university and it took its toll on my studies aswell to where I am now looking for a job with each day getting all the more stressful and depressing - I shudder to think what my average blood glucose is now.

The condition affects people in different ways as does diabetes, so it's really difficult to manage my lifestyle having 2 debilitating illnesses one half of your life unable to control while fighting for your life on the other.

 

[ferretlives]

I realise this is on children and parents forum but it should apply to me just as much.

I was diagnosed with HFA / AS at age of 7 and with type 1 at age 19 during college, it started off well although still using injections, I can't say it has gotten easy over the years, what with depression and anxiety, most days I don't see why I should do these things like blood testing so I rely on how i feel and sometimes miss injections altogether sometimes deliberately sometimes I forget. Before diabetes though my memory was way better - that might have been a trait of AS - but it started degrading as soon as my control of diabetes worsened, started with 6% hbA1c and went up to 12% during university and it took its toll on my studies aswell to where I am now looking for a job with each day getting all the more stressful and depressing - I shudder to think what my average blood glucose is now.

The condition affects people in different ways as does diabetes, so it's really difficult to manage my lifestyle having 2 debilitating illnesses one half of your life unable to control while fighting for your life on the other.

Hi nmr1991

That is really a lot to deal with at any age, do you have regular appointments at a diabetes clinic? If so you should ask them if they have any kind of extra support like coaching or counselling, something similar was offered to us but my son was only about 11 at the time now he is seen by the local CAMHS (or CYPS now). Also you should check with your local branch of the National Autistic Society to see what kind of support they can offer (I think they have an ongoing campaigns about jobs) or ring the NAS helpline.

There must be support and opportunity out there and you should grab it while you can.

Stu

 

[ponies123]

I was just wondering if there are any other parents on here that have children that are diabetic and also autistic.

My little girl is autistic and was diagnosed a few weeks ago with T1. The DN seems to think that autistic children in many cases cope better than those without autism , so I was just wondering if other parents have found this too?

Bex

hello there,im new to the forum. my son jamie is 13 years old been diagnosed 3 year in may,im struggling with behaviour etc noticed a difference when he was7!! been trying ever since to get him assessed, well behind in school and really struggling with diabetics even his nurse picked up on things when he was first diagnosed feel like im hitting a brick wall all the time

 

[BekkiG74]

@ponies123 I completely understand that feeling of hitting a brick wall. No one would listen to me for years but you just have to keep on going back to your doctor , getting the school involved etc have you tried self referring to camhs? Also because he's over 12 you could try yes which is the youth enquiry service. I really do know how hard it is and you will feel like giving up at times , when that happens just take a break from pushing and then build up until you're ready to push the authorities again! If there is anything I can do to help in any way , then please do message me or post on here and if I can I will help in any way! Sending you big hugs and take care x

 

[ponies123]

@ponies123 I completely understand that feeling of hitting a brick wall. No one would listen to me for years but you just have to keep on going back to your doctor , getting the school involved etc have you tried self referring to camhs? Also because he's over 12 you could try yes which is the youth enquiry service. I really do know how hard it is and you will feel like giving up at times , when that happens just take a break from pushing and then build up until you're ready to push the authorities again! If there is anything I can do to help in any way , then please do message me or post on here and if I can I will help in any way! Sending you big hugs and take care x

@ponies123 I completely understand that feeling of hitting a brick wall. No one would listen to me for years but you just have to keep on going back to your doctor , getting the school involved etc have you tried self referring to camhs? Also because he's over 12 you could try yes which is the youth enquiry service. I really do know how hard it is and you will feel like giving up at times , when that happens just take a break from pushing and then build up until you're ready to push the authorities again! If there is anything I can do to help in any way , then please do message me or post on here and if I can I will help in any way! Sending you big hugs and take care x

h

 

[ponies123]

h

hya thanks very much for that we went to see a woman who deals with behavour prob, waste of time just repeared same questions then they discharged him without telling me said cause he wasnt basically causing avoc in room we was in hes fine, diabetic nurse brill,got full backing from her she is there when ever i need