My daughter has Autism, she is 6 yrs old and verbal, but cannot express when she feels unwell or has pain. I just notice her behaviour becomes more challenging. 2 weeks ago she was dx’s with T1. Any other parents advice or stories would be greatly appreciated.
I’m so sorry that you’ve found the need to join our group. But welcome! This is a great place for information and support.
I am so sorry to hear that. I have an autistic child and I have type 1 myself. I’m not going to sugar coat it— this is a very difficult situation your family is in. You will absolutely need to get a CGM (continuous glucose monitor) pretty much immediately. If that’s not already in the works, please stop what you’re doing until it is. That would be my number one priority if I was you. There are ways it can be paired to your iPhone, etc so that you can keep track of your child’s blood sugar even when they’re not with you. @rgcainmd and others here can help explain how that works, I don’t know a lot about it myself.
You’re going to have to become your own expert on diabetes management, and doing it in order to manage the blood sugar of someone who can’t communicate and likely won’t cooperate is going to be very difficult. My thoughts are with you. PM me any time.
Welcome to TuDiabetes. There are members here with autistic children but I’m unsure of any combined with type I diabetes. You’ve found a good site with caring and knowledgeable people.
I take it your daughter is a high functioning autistic child like our son. I gather that from the fact that she is verbal. My autistic son, who is now 9, still mostly does not communicate or socialize on his own. These behaviors have to be prompted. When asked questions our son mostly repeats what we have asked.
My heart goes out to you. Our two year old son is the one with T1 and that is a lot like having an autistic child with T1 because neither can communicate when they are feeling a particular way, pain, discomfort, etc. Get a CGM ASAP, as has been indicated already. It’s the single biggest help so far for our two year old.
My best advice is breathe. Relax, try to stay patient and level headed and just work through each struggle as it rears its ugly head.
As I understand it things get easier eventually. Never easy, but easIER.
That sounds like a monumental challenge. I looked, and we do have one discussion from another mom with similar circumstances
please feel free to add a comment to it, maybe you’ll “wake them up”
feel free to join any discussions here, we have some other parents with fairly newly diagnosed kids
My heart goes out to your family. Welcome to this site which is full of all kinds of wonderful info. The people on this site have helped me so much and are always there for you. This is even in the middle of the night when you are struggling with blood glucose. My only experience with autism has been with a few former students in my classroom and I know that transitions were difficult. I am t1 and understand those struggles. I wish I knew more to help you but I can listen. I will be here for you. Hugs
Welcome to the club no one wants to join (parent of a T1), and congratulations that your daughter has already been diagnosed on the spectrum.
My daughter is also on the spectrum. Way back when, no practitioner believed me about this as we looked into getting our daughter diagnosed, because “only boys are autistic”, or “but she can talk and is ‘social’!”
Everyone on this forum can help you MUCH MORE with the parenting diabetes aspects than I.
Just want to give you your due respect for the challenges and joys you have already faced by parenting an autistic child.
As the saying goes – and it’s true for each of these conditions –
When you have met one person (on the spectrum / with diabetes), you have met ONE PERSON (on the spectrum / with diabetes).
Each of these conditions vary day by day, as well as from individual to individual.
But you will find much support and helpful info and people for you and your daughter here.
We are here to listen and help where we can.
Wow thanks so much for all the welcoming and helpful replies. I live in Ireland and while CGM and an insulin pump has been mentioned by the Paeds endocrinologist, she wants her to get used to the insulin pen 1st. My daughter is fine with the finger prick monitoring ( she actually likes it as I think it’s helping with her sensory seeking part of her autism) giving her insulin is a struggle, but I am a nurse so I’m used to giving injections ( very different when it’s your own child though) My main worry, especially when the’honeymoon phase is over, is that she can’t express how she feels. So how will I know when she is having a hypo/ or running high. I have asked the autism team ( speech therapist/ psychologist) for help but they said they don’t know anything about diabetes, they are pretty useless anyway). Her school have been amazingly supportive and have gone to the hospital for education sessions on T1D.
Anyway this group seems really good, I’m so glad I found it. Btw what is LADA, I see it in a lot of posts but don’t know what it means🤔 Thanks again.
LADA is a form of type 1 diabetes that onsets in adulthood.— latent autoimmune diabetes in adults (you might see other variations of the acronym)
A cgm is not dependent on having a pump, you will still use the pen for as long as you like with it, but it will be like having a finger stick every 5 minutes 24 hours a day. If your kiddo can’t communicate it could be an absolute lifesaver. I can’t urge you enough to aggressively pursue one right away. I do not think they are necessary in many cases, including my own-- but if my autistic child had type 1, I wouldn’t be able to sleep until they had one.
If your child can’t communicate how they’re feeing, the likelihood that you’re going to just happen to check their blood sugar the moment before they go into a crisis is very very small. Even if you happened to, how would you know the difference between a stable borderline low reading and a potentially deadly borderline low reading that’s plummeting strait down. A cgm gives you constant monitoring and a whole lot of meaningful context… In the case of a kid with autism who can’t communicate it could save his life.
Plus if your kid is like mine he’s probably an unbelievably picky and unpredictable eater… Which would make managing much more difficult as well without a cgm.
CGM is imperative for this. I use it for my 2 year old and it’s enabled me to actually get more than 2 hours of sleep during the night. Knowing the “trending” information is a true blessing. It’s worth getting and by the time the honeymoon phase is over, I’m sure your endo will recommend it. However, if you feel your child needs it NOW, fight it. CGM is the best thing since…ever. CGM combined with the pump is about the best quality of life that a diabetic can have IMHO. I’m finding out now that it’s not easy …my 2 year old just transitioned from MDI to pump, but I know if we stick with it, it will make everything so much easier.
Would a diabetes alert dog be an option? This may help with highs and lows detection.
Hi Sam19 is right. If possible CGM is the way to go. It’s not fail-safe and the sensors can come off if one is not mindful…so diligence 24/7/365 is what you have to absorb. My son, although not autistic, was so young that it was up to me to “read the signs,” as well as set my alarm at least twice each night to check his BG; this wa b4 CGM.
Additionally, I have cared for many people who have t1 and cannot communicate. So it’s all about looking at BGs and testing or using CGM. I do hope and hope that you have the financial means to obtain CGM as Sam19 advises.
Hi Mariam. I just logged in and saw this…I’m a little late to the conversation, but, as a mom of a child with autism you know that kinship immediately when you meet another parent/hear a similar story. My son was just diagnosed this July. He’s high functioning, but, has the same inability to articulate his feelings/ailments.
Interestingly, my son is great with his finger pricks, too (he just doesn’t like to be surprised/interrupted with requests for one). I’ve considered that part of the sensory processing, as well. He’s in a really strong honeymoon still, and we’re getting his Dexcom this week, so we’ll see how that goes. I think the honeymoon ending, if I’m understanding this correctly, shouldn’t be a super terrifying event but a gradual lessening of control that we once had on his bg. That comforts me a bit.
From what I’m gathering, every autism and diabetes journey is unique to the child, but it sure does help to not be alone. I’m here if you want to talk about some of this stuff.
Some honeymoons end gradually, some rather abruptly.
Alright, well, little itty bit of hope there now dashed. lol
I know nothing, ignore me.
You know Everything about your child
And what you don’t know yet, you will!!!
Hang in there. Have faith.
And come speak with us often.
I was actually relieved when my daughter’s honeymoon ended. Her T1D became more predictable. (As predictable as D gets, that is! )
Hang in there; you can do this!