We’re always hearing the scary warnings that the rate of diabetes is increasing dramatically. Here’s another scary statistic: 1 in 88 children is diagnosed with autism each year. April is National Autism Awareness Month, so we wanted to take some time to highlight not just autism, but the relationship between autism and diabetes… if there is one.
If you’re not familiar with autism (or “Autism Spectrum Disorder” known as ASD), it’s actually a wide-spectrum disorder, meaning people diagnosed with it will have their condition manifest in different ways. From “high-functioning” autism, like Asperger’s Syndrome, to “low-functioning” autism, which can leave people nonverbal, people with this disorder often have communication issues, behavioral issues, and sensory issues. Many with autism can have an unusual interest in repetitive behaviors, from schedules to activities to food. You all saw the movie Rain Man, right? About 40 percent of people on the spectrum have above average intelligence, yet about 25 percent are completely nonverbal.
There isn’t a lot of published information about diabetes and autism, and much of what we found was from effected families themselves. But often, folks living “in the trenches” are the best sources of information about what life with two chronic conditions is really like.
Proof of a Type 1 / Autism Link?
The first thing we wondered was whether or not there is any proven link between autism and diabetes, especially since the diagnosis of both conditions is on the rise. Many parents also wonder, sometimes because the families are dealing with both diabetes and autism, but not necessarily in the same child.
The medical world does not seem consensus to offer. A 2006 study in Finland came to the conclusion that there is no link between autism and diabetes, but doctors at Toronto’s Hospital for Sick Children argue that there could be a connection. A 2006 letter from an Italian physician to the journal Diabetes Care supports the theory that type 1 diabetes and autism are not linked, as Sardinia, an island near Italy with one of the highest incidences of type 1 diabetes, only had two patients diagnosed with autism out of 1,373 diabetics. Quite the minority!
Still, people out there are dealing with both. So what is the combination of autism and diabetes really like?
Double Diagnosis: Raising a Child with Autism and Type 1 Diabetes
In an interview on a special needs website, Ammey, mother of a 14-year-old son, Khy, describes the impact his autism has on his diabetes management: “He has never communicated pain, or feeling ill. We are always so concerned about whether he will communicate with people when he needs sugar or when he’s feeling bad… He will always require daily support with living skills now because his difficulty communicating and deficits with daily living skills puts him in danger.”
M (name withheld), a twentysomething who was diagnosed with autism in high school, explains that his communication issues and repetitive behavior can make it difficult to work with his doctor. One of M’s symptoms of autism is stimming, which is a repetitive body movement that self-stimulates one of the senses, such as rocking back and forth, flapping hands, or scratching the skin.
“My mother has been concerned that the way I communicate might interfere with the medical care I get,” M says. “One of the biggest issues is my inability to describe how my body feels, and in me wanting doctors to give me more space. I’m a little concerned that we can’t really tell if I have neuropathy because I don’t know what I’m feeling. I’ve had a few medical providers who were freaked out because I was jumping or flapping and they figured that meant something was wrong.”
But this doesn’t mean autism and diabetes are always at odds. Many people with autism resist change, and because diabetes management can be easier with a strict routine, the two can go hand-in-hand. Robert Plamondon, a father of Karl, 17, writes on his blog, “Because Karl’s autism means that he likes his routine, he’s settled into both a dietary and a daily medical routine very well. Because he doesn’t pine for treats or change his mind about what he wants for dinner based on what’s going on around him, it’s very easy to stick with things that work.”
However, rigidity is not always healthy, as Courtney Hurford, founder of the Facebook group Autism and Type 1 Diabetes, explains. She agrees with Robert that rigid eating habits can be great for diabetes, but that’s not necessarily what her son’s autism needs; anything new can be terribly upsetting to a child with autism, so smoothing the process of accepting new things is an important part of helping her son, Luke.
“As a parent of a child with autism, it is important to expand the diet and break the rigidity,” Courtney explains. “So then as you fulfill your ‘autism parent’ responsibilities you have two issues: new carbs that you have to watch closely, figure out how they trend, and then respond with an appropriate insulin-to-carb ratio.”
But the biggest issue is getting an autistic child to accept new food without the corresponding stress reaction. Courtney says, “For our children, the overwhelming sensory issues related to sampling new foods can cause (in our case) a blood sugar spike of 100-plus points within NO time. This is problematic because you cannot create proper insulin-to-carb ratios when the underlying cause of the spike is stress, not carbs.” Frustrating!
In addition to Courtney’s group, there’s also a Yahoo! group, Autism Plus Diabetes, for parents raising children with both conditions. If you or your child has both diabetes and autism, we would love to have you share your story in the comments so we can help link families and individuals with the support they need!
Link Between Type 2 Diabetes & Autism
A second issue is a possible link between autism and type 2 diabetes. Dr. Michael Stern, a biochemist at Rice University, has been studying a possible connection and has found that there is a common underlying mechanism: hyperinsulinemia, which is a precursor for insulin resistance.
Dr. Stern’s hypothesis was published as an opinion article in a recent issue of the journal Frontiers of Cellular Endocrinology. Although this theory has not been studied in-depth, Dr. Stern says, “It will be very easy for clinicians to test my hypothesis. They could do this by putting autistic children on low-carbohydrate diets that minimize insulin secretion and see if their symptoms improve.”
You can also watch a short video where Dr. Stern discusses his theory.
Pregnancy + Type 2 Diabetes = Autism in Children?
Researchers at the University of California Davis have given mothers with type 2 diabetes or gestational diabetes something else to worry about. They recently found that 9.3% of children who had autism had a mother with one of these conditions, compared to 6.4% of children with autism who were born to a mother without diabetes. In addition, 11.6% of children who were born to a woman with diabetes had developmental disabilities.
Researchers determined that autistic children of diabetic mothers were more likely to learning issues and problems with language and communication, compared with children with autism born to non-diabetic mothers.
When I read this news, I groaned so loudly that my husband asked me what was wrong. Showing him the headline, I said, “As if we don’t have enough to worry about!” (We’re thinking of starting a family soon.)
Why such a high incidence of diabetes in diabetic moms? Researchers believe that in diabetics, high blood sugar levels during pregnancy causes fetal exposure to high blood sugar (what happens to mama happens to baby), and so the baby starts producing more insulin. However, elevated insulin production requires greater oxygen use, which may result in depleted oxygen supply. In addition, researchers say diabetes can cause fetal iron deficiency. Both low oxygen and low iron can cause problems in fetal brain development.
“The sequence of events related to poorly regulated maternal glucose levels is one potential biological mechanism that may play a role in adverse fetal development in the presence of maternal metabolic conditions,” said Paula Krakowiak, one of the researchers. That’s a fancy way of saying: PWD Moms, you need to have near-perfect glucose control! (At least that’s what I hear)
And it’s not just children of women with diagnosed diabetes who are at risk. In the study, obese women were 1-2/3 times more likely to have a child with autism and were more than twice as likely to have a child with another developmental disorder, compared to women without a metabolic condition.
While this particular study didn’t include mothers with type 1, we know that all types of diabetes affect blood sugars, so I’m begrudgingly adding autism to the list of reasons why I hate diabetes.
Got any Autism + Diabetes insight to share? We’d love to hear from you.
My oldest daughter volunteered in a program with autistic kids a few years ago. The boy she was assigned to was actually a twin, but only he had type 1 diabetes. The hardest part was when he’d go low, because he would get crazy and start swinging at people, or sometimes go catatonic.
As he got older, taller and stronger, they had to move him to a special institution where he could be restrained better when the lows hit. Still breaks my heart. My daughter had a real connection with that boy!
I have an 18 year old autistic daughter with some aggression and self injury issues. I am suspicious that her aggression may sometimes be triggered by low blood glucose levels. She is non-compliant with medical procedures though, so getting blood requires sedation, restraints and a sizable crew of stout wranglers. I’d like to monitor her blood glucose levels to test my hypothesis. Does anyone know of any monitor that works for non-compliant patients? I like the C8 Medisensors concept, but I don’t think the device is available yet.
Hi James, blood glucose meters for diabetics need much, much less blood than a typical blood draw — the home use units take just a tiny droplet. I understand that your son is not compliant but I wonder if he could handle a prick as opposed to what you might be thinking as per a lab draw?
I don’t know of any meter that is tailored to meet the needs of a non-cooperating patient. But the Freestyle Lite meter requires the smallest sample of any of the meters on the market, that is what we use. A small bead is all it takes.
Good luck,
Susan
Uh, why wouldn’t they just give him something sweet to eat when “the lows hit” instead of restraint and institutionalization? This sounds like abuse, not diabetes management.
It would have been helpful if they gave the stats on those moms with diabetes during their pregnancy. it’s like saying diabetes causes kidney failure–yes it does, but how you control your BGs throughout the course of your disease has a big effect. were these moms coming into pregnancy with A1cs of 7 or 10? without that I can’t really spend too much time worrying about it.
I have three daughters – my oldest who is 15 has autism and was diagnosed at age 2 1/2, a 13 year old and a 9 year old who has Type 1 diabetes and was diagnosed 3 years ago. Do I think there is a connection? Well, I think something is awry in our immune gene pool, yes. I consider my oldest daughter’s autism a reaction to the multiple, multiple vaccinations that assaulted her already compromised immune system. It ‘tipped’ her over into autism. She was born completely healthy, happy, spoke at a normal age and hit all her milestones. We lost her to autism at age 2 and 3 months later, everything was lost – eye contact, communication, everything.
All in all, I think we rolled the dice and have these two things in our family. Connection? Maybe. Maybe not.
There may indeed be a connection between immunity problems, autism and diabetes, but it’s not vaccinations. That whole Dr. Wakefield thing was completely renounced by the Lancet. They found out after the articles publication that Dr. Wakefield had been taking money from a lawyer suing vaccine makers. The paper itself also did not prove there was a link between MMR and autism and the results couldn’t be replicated.
I myself am Type 1 and have Aspberger’s, so I want the scientists to get it right AND I want children to be protected from childhood diseases. My generation (I’m 46) were very fortunate to have the vaccines that were available to us–they helped virtually eliminate whooping cough and polio in 25 years.
Tim,
I respectfully disagree with you about vaccinations and autism. I think it was a PART of what played into my daughter having autism. Vaccinations are far different now than in your, and mine era. By the time I was 2, in 1966, I received 2 vaccinations. My daughter, comparably, by the age of 2, received 14. Yes, 14. On one doctor visit, the one that resulted in non stop screaming for 3 hours, red marks all over her body and eyes rolling back into her head – that day was a vaccination total of 4 alone.
You may quote and unquote, state and unstate Wakefield. There are thousands of parents with autism, hundreds of thousands, who see a causal link between vaccinations and autism. My daughter also had a total of 62.5 micrograms of thimerosal, a mercury additive, by the time she was done 14 vaccinations. You and I, no thimerosal.
I am not anti-vaccine. I believe in them. I believe they have cured diseases that have been almost eradicated from this Earth. I want a safe, timely vaccine schedule for children. I want thimerosal out of vaccines. I want additives that create a long shelf life out of vaccines. I want truthful vaccine adverse reporting by the companies. I could go on and on.
I respectfully disagree with what you state.
When you give the child attention, eduticaon, direction, in general, you are helping. If a child can write, but not talk, then allowing them to write is good. It really depends upon exactly what you are planning. You can keep giving them higher level work in the areas they are good at, but also it’s good to encourage areas that are weak. I am guessing you are looking at what to do in an eduticaon class It’s good to take your cues from the child. When you observe him/her, you can then develop a plan that fits. If you are a parent looking at ridding symptoms of autism, than this may not be necessary. Thousands have been recovered from treating for pathogens and toxins, my children included. Education did not help them progress much, but biomed took away all those issues. Now they are not distinguishable from any others, and are in regular school. So, basically, biomed did miracles and eduticaon did very little for my children. You can learn all about it by googling autism recovery autism pleomorphic pathogens
I have a son who is 12 and is seriously affected by autism. He is also a type 1 diabetic. I think the biggest issue in our life is the difficulty this intersection creates in caregiving and access to programs. The reality is that people who are comfortable and accustomed to working with autism have zero experience with diabetes and the very idea of it is frightening to them. For the most part they feel “maxed out” with their current level of responsibility and reject the idea of learning about diabetes care.
By the same token, diabetes people are absolutely flummoxed at the mention of autism and the camps, programs, and groups that exist to support diabetics are loathe to create an inclusive environment. They too feel “maxed out” and have little or no desire to adapt to meet the needs of the developmentally disabled.
That leaves our parents stranded — not only for our kids during younger years, when we desperately need things like summer camp and after-school programs — but also as our kids grow into adulthood. Group homes and other supported living facilities are not set up for or licensed for medical care. Our adult children will either need to live at home or in a facility designed for people with much more serious medical conditions, which is not conducive to maximum independence and access to peer support.
Finding out your child has a double diagnosis is one of the loneliest positions a parent can be in. You are no longer the same as the many parents with an autistic child you used to call your fellow travelers. You can no longer access the same programs or the same caregiver pool. No one will understand your world except another parent who lives it — and we are few and far between.
My son was just diagnosed with Asperger’s at 14. He was diagnosed with Type One Diabetes at 7. It is extremely overwhelming. I am looking for a support group or someone who can give me a bit of guidance.
My youngest son was diagnosed with classic/severe autism when he was 2.He was diagnosed with type 1 diabetes when he was 8.
I was reading studies about it and the chance of having severe autism and type 1 is about 1 in 100,000
I have an 11yr old son who has mild Autistic disorder / ADHD and this year T1 diabetes. It is not a great mix! Any of the above are a challenge but the mix is really, really hard!
Hi. My son was just diagnosed with Type 1 diabetes as well.
He has autism, though seems Aspie like at this point in his life.
Would love for you to email me, maybe we could support each other. The Cooper Family without any spaces at America Online. I have a feeling they would probably not send my email if I wrote it normally. We live in Maryville, TN. Look forward to hearing from you!
I am wondering if anyone would be willing to share some of the behaivoral experiences they have had with their autistic children with diabetes. I work with a severly autistic, non-verbal 13 year old boy at school. His parents are not cooperating nor wanting to hear our concerns regarding their child, his aggressive behaivors, and our suspicion of diabetes. He has been experiencing several diabetes like symptoms along with his increasing aggression. I am just wondering what type of behaivors others have experienced when dealing with the highs and lows of diabetes and autism. Please feel free to email me with any information or experiences that I may be able to research and try to figure out a way to approach his parents and team with my concerns.
Thank you
We do have autistic pateints in Norfolk, I have not seen any link, I often attened clinics for diabetes, I have not encountered any autistic patients attending, it might be they get a different treatment and care plan
regeim, if they are in care, it is interesting article but with so many new cases of diagnosis, and increased numbers of
people developing diabetes could it be conclusive. There appears to be no easy obtainable data in this area, on the
figures of autisic people, or autistic people with diabetes, I
will see if I can find out what the situation is my area.
I have just found a huge library of informaion for help with autisim in the classroom Google Simply: Helping Children with
Autiism, there is a wealth of information available, this is UK google
site by the way.