Just curious if anyone out there has experience with an autistic child with Type 1 diabetes. My daughter (5) was recently diagnosed with Type 1 and I am just looking for someone that understands and can offer suggestions on some of the additional difficulties that we face. Thanks!
Tamra, I have a 13 year old type I without Autism; however, my nephew has Ashberger’s Syndrome. I do know that fact would certainly throw a monkey wrench into the whole diabetes management. I just wanted to wish you the best of luck. May God Bless you and your whole family!
I have 12 yr. old twin boys… one was diagnosed with T1 at 9 yrs. old and his twin was diagnosed with autism one year earlier at 8 yrs. old (I know it’s a late diagnosis). I can’t relate to the one child with both, but I do understand how hard it can be…my life is non stop with both of them between counting carbs and managing diabetes to giving supplements and managing his gluten and casein free diet. I hope you find someone like you who is dealing with both… I just wanted to give my 2 cents and let you know you are not alone in this. God chooses moms of special needs kids for a reason.
Thanks for the well wishes. The autism is challenging enough, but the T1 diagnosis is just making everything a little more complicated. Not to mention the fact that we have been living in Okinawa for the past two years and we were 8 weeks from moving home when she was diagnosed. We are currently living in temporary housing until our flight back to Florida on the 16th. Please keep us in your prayers as we will have a 26 hour day between flight time and layovers!
Wow. I am guessing they must be fraternal twins, since they both have different diagnoses. I am actually a pediatric occupational therapist and have worked for years with kids on the spectrum. I have seen many cases not diagnosed until the ages of 6 to 12, though doctors are FINALLY getting better about seeing the signs earlier. I knew at 6 months that my daughter most likely had autism, but I am with her all the time and knew the subtle signs. When I told her pediatrician that I wanted her in therapy, he agreed only when I really pushed for it. When I wanted a neuro consult, he couldn’t figure out why, since she SOMETIMES responded to her name and couldn’t possibly be autistic. (It is beyond me what diagnostic criteria he was using to draw that conclusion.) I quickly took out my cell phone and showed him a clip of her hand flapping while watching TV and he changed his mind. She has made excellent progress, but the diabetes is just making things more complicated. She can’t tell me how she is feeling and she was only diagnosed about 6 weeks ago. (That’s right, just 2 months before we move home to Florida following a 2 year tour in Okinawa!) I have learned that she gets sad and tearful when her sugars are low and irritable and agitated when they are high. We are still trying to find the right dose of insulin for her, as she is still having some extremely low numbers in the mornings. They are always lower than 70, typically in the 50s and we frequently get 30s and even in the 20s two times now. We are also getting numbers around 250 at times. So, I will be happy when we do get back to Pensacola to have a pediatric endocrinologist to start treating her. We were medivac’d to Hawaii to a Childrens Hospital after she was diagnosed, as Okinawa isn’t set up with pediatric specialties. Her pediatrician here has been really good to guide us as best as she can, but it is just out of her area of expertise.
Thanks for sharing your story with me. I have actually found a small group on facebook that is for people (or parents) with Type 1 and Autism. I am blessed to have such a great support network of friends, family, church and now online groups!
Best of luck with your boys!
My thoughts go out to you…I hope your move goes smoothly. BYW…we used to live in FL too, Ft. Lauderdale. I hope it makes things easier for you.
I have a child who is 11 years old. He has autism (seriously affected, diagnosed age 2) and he has type 1 (diagnosed at age 6). Welcome to a very exclusive club.
I wanted you to know there are others of us out here. We even have a Yahoo Group and more than 30 members! (to me that feels like a lifeline). Anyone who has a child with ASD (or any developmental disability) + t1 can join by sending a message to: email@example.com
I remember two big things about the early time with the new diabetes diagnosis. The first was of course how hard the adjustment was for my son, and for the whole family. I think about things like the shots and tests and how much he hated them, how difficult it was to force him, and how awful we felt about having his siblings watching us force him.
The second was more personal, and had to do with my place in the world. I had become accustomed to the autism, and had built up a support network of friends whose families were like mine. I thought I mostly understood what it meant in our lives.
But suddenly, in an instant, I was different from all my friends. I couldn’t take advantage of the same programs and services that they could, I couldn’t take the same attitude toward food and meals or being separated from my son. So many things changed. Everyone was very kind of course, but they couldn’t really understand what it felt like to be worrying at that new level. I felt like an outsider in my own community. And when I looked into the diabetes community, I really felt like an outsider. People just didn’t have the same issues, and for us, there is very little about diabetes care that is not affected by autism in some way.
So in case you are going through any of that, I want to let you know you are not alone and it does get better – both for your family and for you. My son simply doesn’t remember a time when testing didn’t come before eating. It is so ingrained in his routine that he never questions it. Once I found our groove with care at school, it became much less stressful (I admit, that took a while). And our whole family just takes it for granted at this point.
Easy? Never. But calmer, under control. The worry eases back.
Hope you are doing well,
Wow, Susan, you DO know what I am going through. I am a pediatric OT and I caught the signs for my daughter’s autism as early as 6-8 months old, though I was in a bit of denial about it. While I was pregnant I did everything I knew to do to prevent autism. That was the one diagnosis I didn’t want, since I had worked so long with autistic children. Working with them was a passion, but I knew living with them would be exhausting. I was right. Even though my daughter is only moderately impaired, the challenges it is presenting with the new t1 diagnosis is very stressful for me. I know that the first 6 months is all about finding the right dose and diet that works for any new t1 patient, but since she can’t tell me how she feels, it makes it even harder. It is like she is an infant and I am trying to decipher her cries and anticipate needs. Though she isn’t extremely rigid about daily schedules, she does well with a general routine. She has already adjusted to the routine of “check your sugar” and “shot in the arm” for meals. She does very well with me doing the treatments. While we were in the hospital and strangers were doing them, it was a nightmare. We had to swaddle her and I was \worried that I would never be able to do it on my own. It only took a few days after discharge where Daddy didn’t have to hold her and she sat still for me. That was an answered prayer. I have always had to take her food with us where ever we go as she is an extremely picky eater, so that part wasn’t such an adjustment. The mood swings and behavior issues related to too high or too low BGs is the hardest part right now. I felt very well prepared for the autism and was really pretty good at knowing what behavior was sensory related or just bad behavior and I could address the issue accordingly. Now I am at a loss on what behavior she can and can’t control. I am sure even some friends are questioning why I am consoling her when she tantrums instead of disciplining her, so I understand about feeling separated. Not many understand the increased stress this puts on me. We are also less than 2 weeks from moving from Okinawa back to Florida. We are in temporary housing right now and her entire world has been turned upside down. We moved here when she was 3 and not really aware of her surroundings. She is now verbal (though at around a 20 month level) and she is aware of things. I can’t however, explain to her what is going on. She keeps asking for the 4th floor (where our apartment was) which is really sad to me. She was just diagnosed with t1 in mid-May and we have to deal with that on top of the changes in living arrangements and school ending here. Though I am looking forward for her to get back to a schedule with starting kindergarten in Florida, I am terrified of how she will handle being separated from me as well as having strangers doing her treatments.
Thanks for letting me know that there is light at the end of the tunnel. Thanks also for being there to listen to me vent for a little. It helps know that there are a few out there that do understand. I will check out the yahoo group you suggested. I also found a small one on facebook with around 30 members. It is nice to know that there are some people out there that can give me some suggestions and feedback based on experience.