My daughter technically hasn’t been diagnosed with type 1 As we are having our first endocrinology appointment tomorrow. She is 27 with low functioning autism and new diagnosis of just 7 weeks ago when she went into DKA and was in ICU for 8 days. Wondering how other parents of someone on the spectrum has dealt with the new diagnosis and unconventional treatments we may have to use
I also want to add how did you prepare for your first endocrinologist appointment
Hi Mindy! You made it! I have some of the same questions as you. I did a search for autism on the forum and came up with an old thread. I hope there are others who can give insight into this topic.
I don’t have children, nor do I have personal experience with autism, only experience with friends’ children or personal friends with it, none of which have T1D. I am, however, well versed in metabolic processes and am T1D.
Before getting a diagnosis, there isn’t a whole lot to be done. There are pages and pages that could be types about T1D, but if it’s T2, for instance, many of the same helpful advice can apply, but the difference is life and death (T1D NEED insulin to live, T2D rarely does, but still can be dangerous, usually long term from high BG)
If the diagnosis is simply an ‘official’ dx, and you are already aware of the present condition, I would recommend a dexcom CGM, utilizing the Share App to put your mind at ease. CGMs give you a peace of mind that cannot be found anywhere else, unless you have been T1D for Year(s), usually decades, before the technology was as developed at it has been in recent years. They’re waterproof, last for days (7 officially, but on average 1 month, if stretched, 1.5months to 2 months if desired), and alleviate the needs to worry about potential highs and lows.
A pump can be useful, and many are good, but with what little experience I have with autism, I would likely recommend a tubeless pump, of which there is only Omnipod at the moment (I also use this currently).Later in 2018 there is supposed to be one or two other tubeless pumps getting released (may have been 2019, ill find links somewhere if relevant later). Ultimately, these are not required, as technically they do the same thing a shot would, however there are slight medical benefits to not using long acting basal insulins and only using short term insulin (mostly pertaining to how they effect metabolic systems and the crystallization of the medicines in subcue tissues). If tubes are not an issue, then the difference between an Omnipod and any tube pump is only a matter of personal preference, as they all do the exact same thing. I personally have some ridiculous phobia of hanging a tube on something and ripping out my infusion set, whereas I have actually ripped off an omnipod accidentally once, and just kind of looked at it with a mental ‘ow’ before just grabbing another one. Perhaps a tube accident would not be as violent as imagined in my head, but as stated above, it is purely preference in that regard. Many people use tube pumps without this issue, so perhaps I just know im too clumsy for my own good.
You’re going to come across a lot of information and be overwhelmed with a lot of do this and do that, so ultimately what I would suggest is to take it day by day, and remember that if T1D is diagnosed, at the end of the day, what matters is avoiding lows first, then avoiding highs after. If you’re doing that, you’re already doing it 99% right. If you aren’t, there’s probably something easily that can be changed, and many people here would be willing to help, along with your health care team.
The one thing I would suggest specifically pertaining to the Endo, however, is find one you like. If BG control isn’t an issue, you may only see him/her twice a year, but having a good endo that you get along with and is experienced will make your overall time feel much better.
Hi Mindy! My son is 6, so we have a bit of an age difference between our children, but he is both type 1 and autistic. He was diagnosed with t1d nearly 2 years ago, and we got an autism diagnosis last year.
So, we have a pump for him, which we got 6 months into diagnosis. He still tells us he doesn’t like site changes (every 2-3 days), but he prefers it to many needles a day. He is a grazer, and eats a million small meals, so the pump makes that much easier to manage. We happen to have the Medtronic 670g, and had hoped it would manage his emotional responses better. It IS better than before, but his bg can raise or drop fairly quickly, which makes managing things difficult.
I don’t know how “low-functioning” your daughter is, as that’s pretty subjective, but she will hopefully learn to at least recognize when she is low. It took my son about a year before he felt his lows, and we were told that his sensory issues could prevent him from understanding how his body is responding.
Long story short, we take things one day at a time. I’ve cried quite a bit. I got a therapist for myself because it can be very overwhelming. We do our best to have a sense of humor about things, and we rely on our friends and family to help float us along when we feel like we are sinking.
Feel free to reach out if you need to!
Best of luck,
Hi all! I’m new here, so I hope Im commenting on the right thread. Your post was posted to a local type 1 facebook page and brought me here. My son is 18, autistic and recently diagnosed with type1. He hates the shots! Today we received his package from jdrf with a omnipod display in it. His response wasn’t a good one, but he doesn’t exactly give a good response to the injections either. Even though I feel it’s a necessity to get him on a tubeless pump asap, I have to consider his feelings just as I would my typical children. His reaction to seeing it was “I’m scared” and “no” He doesn’t understand that this is going to be a lifetime dx. Your daughter may not either. He doesn’t tell me when he isn’t feeling well. We ended up in DKA and stayed in ICU for almost a week before we knew that he had type 1 also. I feel for you. It’s tough on them and us. It’s a difficult enough dx without the daily challenges we already faced with autism. We’re working on him checking his levels and that’s not going well. Hang in there! It’s bound to get easier as time goes on.
I can only imagine what you are experiencing in helping your son adjust to living with diabetes and enduring endless shots - I never liked giving myself shots and still 60+ years later hesitate every time I pick up an needle and syringe. But, Welcome to TypeOneNation!
Like you son, I didn’t want to be connected to a pump and didn’t get my first pump until 47 1/2 years after diagnosis and tens of thousands of pokes with dull needles. then the logic of a pump hit me - one poke to attach the pump every 3+ days instead of an insulin shot 8 times every day. The first pump I was offered was worn as a backpack - about the same size as my three liter camelbak water reservoir used when I bike.
It may help if you could bring him to a gathering where he could meet other People with diabetes [PWD] and let him see and hear from others “how great” a pump can be. Chec the Events Tab at the top of this page and you may find something near you.
Hi Mindy - This is really late but there’s a fantastic group on facebook where you can discuss T1D and autism issues. https://www.facebook.com/groups/autismandtype1diabetes/
It’s a private group so you’ll have to send a request. Good luck!
Hi there! My name is Dawn. My son is 22 and has autism and type 1. We are only 2 years in this new world of needles and checking blood sugar. The beginning was a nightmare. After the initial checking of his blood sugar (which took forever) and the first shot. He understood that this was part of his new routine. The problem that was HUGE was limited his food and controlling his portions. He thought we with holding food from him. I had to put up a sign and prompt him that if he wanted to eat to tell mom, write it down and measure it. He would sneak food when I was in the restroom or any chance he got. Just take things day by day. That’s all you can do with autism. I would like to hear how things are going. Let me know. email@example.com