Diabetes type 1

Hello

Just joined here. i was just wondering wether there is any parent out there with an autistic child that also has type 1 diabetes like my daughter. She was diagnosed last may and totally out of the blue. would be nice to share ideas or just to know there is some else who understands

Thank you

  • I have an autistic wife who has type 1 diabetes?  Hypo's?  Casualty visits in the early hours of the morning?  Sudden collapses roaring drunk?

    Yep. I know.  I'm on the spectrum too and I married it.  In fact, it woke me up last night, yet again.  Her hair matted into dreadlocks by the sweat from her adrenalin going off, bedsheets sodden on her side? 

    Anything you'd like to ask her?

    Paul.

  • Just saw your post, sorry it is late. Our son who is 16.5 years old has had type 1 diabetes for a couple of years, we do have the occasional hypo, but his school are very supportive and he has been involved in all areas of controlling his diabetes. With support he can do blood tests and his insulin injections, please contact me if you wish detailed information.

    Paul

  • My daughter is 7 years old. Within the last 3 months she has been diagnosed firstly with high functioning autism and more recently type 1 diabetes. It is difficult to describe how we are all feeling at the moment! As both conditions have been diagnosed so close together I was wondering if there is a link between the two. I was really interested to read Jewels post, particularly as her child is a girl. How old is your daughter? How has she come to terms with her diabetes? My daughter is really struggling at the moment, and is having meltdowns every other day. These have gotten significantly worse since her diabetes diagnosis. Getting her to school in the mornings is nigh on impossible!

    Any advice anyone? Please tell me I'm not the only one experiencing this?!?

  • Hi there

    my daughter was 11 and a half when she was diagnosed with diabetes type 1.

    yes it was very hard at first and she still resents it now. i think diabetes and autism are linked with a low immune system.

    my daughter is a bit older and uderstands a bit more now and other times she doesnt and refuses to eat because she says her sense of smell has been enheightened greatly because of what she is taking. but nobody believes this and this is very frustrating.

    feel free to contact me here.

    i can sympathise and understand having someonelse who understands really does help.

     

  • HELLO ALL,

    We have a facebook group with 47 members- parents of type 1 /autistic children, adults living with autism and type 1......always happy to add more, please feel free to join. Type Autism and Type 1 Diabetes...follow the heart icon...that's us.....be well.

  • Hi everyone  Ireally thought I was alone with this one, but im glad i've found this forum. My daughter is now 10 but was diagnosed with diabetes when she was 2 and half followed by the autism a year later. Cara uses an Insulin pump which at the moment i still do the majority of the care for her. Im just hoping one day that she will be able to be independent with it.  Ps will search for face book group really intrested thanks xx

  • i have diabetes i have typ 2 because i dint have it as a kid i think that how it works.

  • Hi there,

    I have  a 10yr old daughter with type 1 diabetes and she is on the spectrum.....we are awaiting an official diagnosis, which we are to get in August. My daughter is extremely challenging....but she is a real Jekyll and Hyde character.....quiet at school....but soooo angry at home with constant meltdowns. I think she is going through the start of puberty and this is making everything worse. Academically she is bright, but every day is a struggle.......most days we have to hold her down to dress her for school....which is not good, but once at school nooo meltdowns. Does this sound familiar to anyone?

  • I was really heartened to read your post, it really feels quite lonely not only to have a daughter with high functioning autism, but also diabetes, and whilst I wouldn't wish diabetes on anyone else, it is good to know that someone else is going through the same things. I particularly identify with the fact that your daughter is doing well academically at school, yet at home is a different person. I think Rosie's teachers would be quite shocked to see some of her performances at home! Because the school don't see any autistic behaviour, and it is not affecting her learning as such(yet), we have been told she will almost certainly won't qualify for a statement. I intend to press for  'school action' in September, as I am afraid her anxiety will limit her concentration. I have also had mornings where I have had to drag her clothes on to her to get her to school. She has quite a lot of anxieties surrounding school, to do with illness someone saying they feel sick sends her into internal turmoil all day. Thats what it is this year, last year it was lit candles (!) At home after school is the worst, she comes out and is fine, by the time we get to the car she has relaxed and let her anxieties she's had during the day out onto me and her sister. Of course she has to have an outlet but it can be v hard. Another source of conflict is snacks, when her bloods are high, and she can't have what she wants too eat after school. Not easy. Is your daughter on insulin injections or a pump? How long has she had diabetes for? Rosie was v excited to hear there was someone else just like her out there!!

  • Hi there Flowercat,

    Soooooo nice to hear someone has a wee understanding of a girl in this position. Eve  has been diabetic since she was 4....so six years......I inject Eve as she is unable to inject herself. We stay in Newton Mearns........just outside the Southside of Glasgow. Would love to chat to you further;-]x