Many health services are designed for neurotypical people, which can make it difficult for people with autism and other neurodiverse conditions to access offerings, such as primary care and dental care.
But more autism providers are looking to tackle this issue by integrating specialized medical care under their roofs.
Creating a “one-stop shop” for autism treatment, including medical services for co-occurring conditions, could improve access to care and make for smoother experiences for patients as well as clinicians. However, some specialties may always need to be referred out.
“Given that most autism service providers currently in the country are ABA providers, I think adding in medical services would be the top priority because a person’s physical health influences their behavior so much,” Suzanne Goh, co-founder and chief medical officer of Cortica, told BHB.
San Diego-based Cortica takes a “whole-child” approach to pediatric autism and neurodevelopment care. The provider has 23 centers across the country.
Dental treatment services in autism
The body’s overall health is impacted by oral health. Poor oral health can contribute to conditions including cardiovascular disease, pneumonia and birth complications.
People with autism are more likely to have cavities and periodontal disease than people without the diagnosis, research shows.
Oral hygiene may be more difficult for this population because of factors including medications, which may cause side effects like dry mouth, along with difficulties with brushing or flossing because of reduced manual dexterity or sensory hypersensitivity around the mouth.
“Generally for patients with autism, we normally recommend seeing them more often in dentistry so that we can make sure that they’re being maintained properly and just educating the people that they’re with … or even with the patients themselves,” Ashiyan Rahman, dental director at Boundless, told Behavioral Health Business.
People with autism may be sedated or restrained to allow for dental procedures to be performed. These measures are sometimes necessary, but nonprofit autism therapy provider I am Boundless uses a trauma-informed approach to provide dental care for people with autism, free of traditional restraints or sedatives.
Ohio-based I am Boundless provides autism services, primary care, dental appointments, job training, counseling and residential support to individuals with IDD. The nonprofit has been in operation for more than 40 years.
The organization provides dentists with additional training and extra time with each patient to allow for the necessary adjustments for people with autism, and gives patients additional tools to increase comfort. Staff also receive training from Ukeru, a company that devised a restraint-free method of managing behavior.
Potential patients are screened and placed into three tiers, representing three different levels of care.
“The first tier is patients who can be easily successful,” Katie Babcock, director of health care operations at Boundless, told BHB. “They really need no support. Maybe just some encouragement, maybe a weighted blanket. Tier 2 is somebody who’s going to need extra support. They might take a med before they come to calm them down, they might want a weighted blanket, or different things that they need.”
Integrating dental care with other services, including behavioral, is helpful for clinicians, Rahman said. Having more care under the same roof isn’t happening enough, Babcock said.
“I think it should be a trend, [but] it currently isn’t,” she said. “There’s just not a lot of people who have the expertise to do it. … We’re seeing huge waitlists and people are not being able to have those needs met. So I think absolutely everyone should join us and build integrated health centers, but I don’t think they are yet.”
Medical care
People with autism are more often diagnosed with medical co-occurring conditions than people without the diagnosis.
Autistic people are more likely to have epilepsy, gastrointestinal conditions, as well as some genetic disorders, like Down syndrome and tuberous sclerosis complex.
All of these conditions are often overlooked, according to Goh. Sometimes, the signs of a condition can be subtle, like “silent seizures” that only happen during sleep. Other times, a person may have less expressive language, so more tests are needed to determine a diagnosis.
Getting patients these tests and medical care is an essential part of autism treatment, Goh said.
“Everything is connected,” Goh said. “So if you are thinking about a child’s overall learning development behavior and wanting to maximize that, which is, of course, what behavior therapists are trying to maximize, … we know that those are directly affected by a child’s overall health. So if that’s your objective, you really want to understand the underlying biology and be doing everything you possibly can to diagnose and treat and support a child’s health.”
Cortica’s whole-child approach to autism treatment includes medical services, such as gastrointestinal care and epilepsy treatment, as well as behavioral services. Having medical services under the same roof as behavioral makes treatment smoother and quicker for patients.
Despite the benefits of centralizing treatments, few providers offer comprehensive approaches to care.
“It’s very rare,” Goh said. “I think many more clinics and practitioners would like to practice in this way. It’s just challenging to bring it all together. Some academic centers do it. But they usually have fewer providers and a very long waitlist.”
Even with these challenges, Goh said combining medical and behavioral approaches under one roof is worth it.
“Everything is interconnected,” she said. “That really is what makes a whole-child approach so important.”
The importance of sleep
Around 80% of people with autism have sleep disorders, particularly insomnia.
Lack of sleep can affect memory, attention, emotional regulation, mood and the immune system. The impacts can be even more severe for children because growth hormones are secreted during sleep, meaning sleep can even impact height.
For families of children with autism who are struggling to get enough sleep, the emotional toll can be huge.
“Most of the time, they come in being very short on sleep and frustrated because it’s difficult to fall asleep early enough to get enough sleep for when they have to wake up,” Carolyn Ievers-Landis, a licensed clinical psychologist and sleep expert at University Hospitals Rainbow Babies & Children’s Hospital in Ohio, told BHB. “It poses a huge problem for families because a lot of these children, including up into teens and young adults, have severe autism and they need to be supervised for safety. So the rest of the household is very much impacted by their difficulties with sleeping, not just the individual with autism.”
Approaches to treat sleep disorders vary widely depending on the patient, Ievers-Landis said. But the goal for any child, regardless of an autism diagnosis, is to be able to sleep independently without comfort items like a parent or bottle.
For some children, including those on the autism spectrum or with ADHD, this may include behaviors that are typically frowned upon, like using electronics or watching videos before bed.
The bespoke approach that may be necessary for treating sleep disorders often goes beyond the scope of clinicians who have not received extensive specialty training.
“Not many people have the type of experience and training,” Ievers-Landis said. “Sleep coaches … don’t know the science of sleep to the level that they should.”
For those reasons, Ievers-Landis said that autism providers should be ready to refer patients out to experts, rather than incorporating experts under the same roof as providers.
“I wish they were aware [of some of these sleep-related services],” she said. ”I prefer that they refer out. They can know the basics like sleep hygiene, things like that, but then if they’re still having troubles, go to an expert in behavioral sleep medicine.”
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