When Kristen Smith’s then 2-year-old daughter was diagnosed with autism spectrum disorder (ASD) in March 2018, as heartbroken as she felt, Smith was not overwhelmed or afraid.
That’s because she already had a son diagnosed with ASD a few years prior.
But 3 months later, Smith was thrown into a sea of confusion and worry when her toddler daughter was also diagnosed with type 1 diabetes (T1D).
“It felt like a double-whammy,” Smith tells DiabetesMine. “I had a great base of knowledge about autism. But diabetes? I knew about it the same way someone who read ‘The Babysitter’s Club‘ did.”
“In my view, most of the rest of the world just doesn’t understand,” she says. “I think it’s a double layer of challenge that people cannot possibly truly comprehend.”
Therein lies the biggest challenge of raising a child with the dual diagnosis of ASD and T1D, she says, and it’s not for the faint of heart.
Smith points out that even beyond the learning and balancing of the two very different conditions, there’s the doubling up of everything: the calls to insurance, the medical appointments, the school meetings — all of it.
“Just look at my phone’s call list. It’s all CVS, Boston Children’s Hospital, our autism team, the diabetes supply place. It’s never-ending,” she says. “But we have no choice but to adapt.”
The combination of T1D and ASD seems to be relatively rare.
A 2019 study concluded that slightly more than
According to the
In other words, a diagnosis of T1D or ASD doesn’t seem to increase a person’s chances of developing a diagnosis of the other.
That could be why, when both happen, it’s so hard to find not just support from other parents, but from medical professionals who understand both.
That said, the idea of a link is still being studied, according to Dr. Tamara Oser, associate professor and director of High Plains Research Network Department of Family Medicine at the University of Colorado School of Medicine.
“The data so far is mixed,” she tells DiabetesMine. “One study says ‘yes’ (there is a link), but another says ‘no.’ We’re still learning, and it’s a growing field.”
What Oser does know for sure — and she’s actually published a 2020 study on this — is that raising a child with this dual diagnosis is incredibly challenging.
“I worked with families with a child with autism… before attending medical school, and have cared for many children with autism as a family physician,” she explains. “As the parent to a child with T1D myself, I began to think about the additional challenges these families might face. I wanted to understand more, and learn from these families, with the hope that by sharing their voices with the medical community we would bring awareness to their unique struggles and resilience.”
In fact, helping these families find support became a personal mission for her.
“Parents feel like they don’t really fit in with either (the T1D or ASD) communities,” Oser says. “it makes them feel isolated and alone. The stories I heard were just heart-wrenching. I got tears in my eyes.”
Smith confirms this feeling of being lost, saying: “You go to a diabetes parent support group, and no one understands the autism impact. You go to an autism parent support group, and no one understands the diabetes. It’s like you just don’t fit in anywhere.”
That’s why Oser is focusing on building up not just data but community for this group.
That said, Smith says, when you do find other families with the same dual diagnosis, it’s magical.
“The people you meet who are in this as well, it’s almost like an instant camaraderie,” Smith says. “It’s a connection you feel quickly, and you realize you need.”
Meanwhile, finding healthcare professionals who cross the divide is a challenge as well.
Jennifer McCue in New Jersey can attest to that. Her son Daniel was diagnosed with T1D 5 years ago, a diagnosis that was difficult for McCue to hear. Then, just 4 months later, he also received a “late diagnosis” of ASD.
That meant experiences that continue with resistance to changing routine, having higher support needs for understanding the whys of what he must do, and situations in which handing off care may not be the option that works best for the child.
For McCue, the first big event came in finding an endocrine team who understood the implications of the dual diagnosis.
“We went through several endocrinologists until we found one who understood both. It took some time,” McCue says.
Smith’s daughter is treated for both conditions at the same center: Boston Children’s Hospital, but she had to work at getting the medical team to coordinate.
“I forced them to communicate, and they do,” she says. “Any special needs parent knows what that’s like. We push for what we need.”
As a doctor, Oser agrees that for families, “the healthcare challenges can be overwhelming. You might see the endo making recommendations but not with the autism needs in mind, or the autism team may make suggestions without a true understanding of T1D, and sometimes no one talks to anybody.”
Oser says this needs to be something the medical community focuses on to better serve these families.
“When you have one [of these two conditions] it’s a challenge,” Oser says. “Both? It’s harder, even, than just one plus one. As a healthcare community, we need to be very open and… go the extra mile, and probably offer longer and more frequent appointments.”
When you take the needs of T1D and overlay them with the oft-found symptoms of ASD such as sensory concerns (both with things attached to the body and with food textures), and higher support needs when experiencing change, you can see how both may not line up easily.
McCue says that on a typical day, her son, while nearing 10 years old, still does none of the daily care tasks that someone with diabetes needs for their health.
Her son has higher support needs for both impulse control and working memory, both effects of the ADS diagnosis. He hates infusion site changes, she says, yet prefers an insulin pump since he finds injections to be “unbearable.”
He fixates on one thing for a long time she says, and often, it’s the “why do I have to do this?” thought that most people with diabetes have, but can push off or dig deeper to understand.
“It does impact him emotionally,” she says. “He’s not always happy, but we get done what we have to get done.”
Routines, she says, are what her son thrives on. And yet, introducing a new one is an even bigger event. That means they may not always achieve some goals their healthcare team may have.
“It’s very difficult to break routines,” she says. “We’ve been trying to get more protein into him, but the kid just lives on carbs. We realize that we just have to work with it as it is.”
To adapt to life with both conditions in a way that worked for her, Smith left a corporate job she loved, took a few years off and recently pivoted to a job in the same school building as her child.
Right now, it’s manageable, with her daughter still young and wearing a Dexcom G6 continuous glucose monitor (CGM).
But she worries about the future, and “those adolescent years when she may have social challenges anyway,” Smith says. “What will that be like with all this?”
Dr. Elvira Isganaitis, a pediatric endocrinologist at the Joslin Diabetes Center in Boston, says the challenges seen in families facing both diagnoses are unique in each situation. It often comes down to “how well can they communicate what they feel or need to do?” she tells DiabetesMine.
A big event is when the child has higher support needs verbalizing hypoglycemia.
“CGM’s may be helpful for this. But with sensory concerns, sometimes tolerating the device may not always be possible,” she says.
Nutrition can be an experience too, since many children with ASD have specific diets, texture aversions, or allergies.
One thing that she’d like to take off the table for parents, is guilt, particularly around vaccinations [an important topic in current times].
“I need to get on a soapbox here,” Isganaitis says. “Vaccines are conclusively proven to show no role in either of these [diagnoses]. They’ve been thoroughly examined and there is no hint of connection.”
What’s a family to do? Beyond making sure you have medical care experts who communicate across platforms and you find some kind of peer-to-peer support, there are things you can consider doing to make the situation smoother.
Smith’s first tip?
“Pinot grigio,” she mused. But the joke points to a tip: The calmer the parent, the calmer the situation. It’s not always easy to achieve.
“It sounds corny but, you can really only do one thing at a time with this,” Smith adds.
She gives the example of her daughter and a finger poke, something the child has a deep aversion to and that takes time, patience and grit for a parent to do. “We just get through it,” she says, “and then take on the next thing.”
McCue believes the calm parent makes a difference as well.
“If a parent tends toward anxiety, if you are not in therapy, consider it,” she says. Even as a preventative measure, she sees shoring up your own emotional strength as the key to success in this situation, “because there is just so much you could be anxious about. The more a parent can stay even-keeled, the better for the child.”
For that reason, McCue suggests parents be careful about finding their peer-to-peer support.
“Stay off the internet and chat groups,” McCue advises, particularly when it comes to diabetes. “We [with the dual diagnosis] cannot do any of the things some may push that all ‘good’ parents do: keto diet, super-low A1C. We cannot do any of those things, so don’t waste your time being pushed around about them.”
McCue’s son Daniel finds occupational therapy helpful, where they work with him on, among many things, the goal of learning how to recognize low symptoms.
“They do things like play guessing games. The goal is to get him thinking about it without him realizing he’s thinking about it.”
McCue also suggests parents help those around them understand something vital.
“The perception is that [children with ASD] have no feelings, but they’re actually hypersensitive,” she says. “Language matters. Having everyone around him say ‘high’ or ‘low’ instead of ‘good and bad’ really makes a difference here.”
Smith also suggests looping in a caring family member or close friend to learn along with you if possible. This not only offers you a person you can be totally comfortable leaving your child with from time to time, it also gives you an additional knowledgeable support person at the ready.
“My mom is an angel,” she says. “She knows just as much as we do. And that makes a huge difference.”
“There’s a routine to T1D, so it’s hard, but it’s not terrible,” says McCue. “The child will adapt.”
Her advice around that? Not changing the child’s diet much.
“We find fitting the diabetes around the autism works best, at least now,” she says.
Oser suggests families focus on not trying to fix behaviors around ASD when a child’s blood sugar is out of range.
A neat trick she’s seen used well for a child adverse to devices is what she calls the “band-aid approach.”
By starting with putting band-aids where the devices would be located, she’s seen families help a child with ASD progress to an insulin pump or CGM over time.
Isganaitis points out that while endocrinologists who specialize in the combination may be rare, the field itself is actually ripe for such adaptations.
“More often than not during childhood, there is such a wide range [of needs, plans, and concerns] from toddler to teen and more, that pediatric endocrinologists always have to tailor their care to where the child is developmentally,” she says.
Oser hopes for more medical attention on the combination, a better umbrella system of care from multiple caregivers, and most of all, a system that leads families directly to strong and positive peer-to-peer support.
In the end? Meeting the child where they are with their current needs and helping them grow are the keys.
DiabetesMine was lucky to receive advice directly from young Daniel McCue, who experiences both:
“Two good things parents can do for autistic kids with T1D: a) Allow them to go to college, or encourage them to live their lives and achieve their goals. b) Let them take CGM breaks, or don’t force technology. It’s a sensory nightmare for so many.”