Autism and the Emergency Department (ED): Why it’s Important

Research shows that emergency department visits are 30 percent higher for children who have ASD and 70 percent higher for teens between 15 to 18 years old with ASD. For diagnosed adults, their ED encounters are twice as high as adults without ASD.

The emergency room (ER) is often a place of stress for most people. However, this stress skyrockets for those diagnosed with ASD.

The National Survey of Children with Special Health Care Needs in 2009-10 found that “caregivers of children with ASD were more likely to report difficulty utilizing services, lack of shared decision making and care coordination, and adverse family impact as compared to caregivers of children with developmental disabilities, mental health conditions, or both.” 

Behavioral Differences often Lead to Challenges for Treating Children with ASD

The many obstacles and feelings of anxiety that come with a trip to the ER are present for many individuals with ASD, especially children. Due to language and learning problems, children may have a hard time understanding hospital procedures and medical tests, which can spike their already high stress-levels. On top of this, ER staff is usually not trained to know how to work with those who have ASD.

“Emergency Room clinicians are trained in the management of aggressive and disruptive behavior in typically developing children, but they may not be familiar with how to manage a child with autism who has severe behavior problems,” says Roma Vasa, a senior author and child psychiatrist in Kennedy Krieger Institute’s Center for Autism and Related Disorders.

  • “Caring for that child is different because of his or her language, social, learning and sensory problems. Moreover, many children with autism have anxiety about medical procedures. Collectively, these challenges can make the ER experience overwhelming and potentially traumatic for a child with autism.”

Luther Kalb, a researcher at Kennedy Krieger Institute in Baltimore, found two incredibly useful conclusions during the first large study of psychiatric-related ED visits for children with ASD between ages 3 and 17. Kalb and his team discovered that:

  • Children who have ASD are nine times more likely to make a trip to the ER due to psychiatric issues than children without ASD. These psychiatric problems include disruptive behavior, physical aggression, physical harm to oneself, and running away.
  • Children with ASD who had private insurance were 58 percent more likely to visit the ER for the above reasons than children who were receiving government-funded medical assistance.

Children and Adults with ASD Constantly Face Healthcare Challenges

Children diagnosed with ASD are not only at risk of improper treatment when visiting the ER, but diagnosed adults are facing similar situations. Adult patients with ASD noted negative experiences with healthcare professionals and lower satisfaction with the communication between themselves and their healthcare provider.

They felt this played a major role in blocking them from receiving proper care. Adults with ASD are two times more likely to have high blood pressure, heart disease, and diabetes. A study shows that they also are reported to die 16 years earlier than their counterparts who were matched for age, gender, and country of residence. If EDs were equipped with the knowledge and expertise to support and care for those with autism, this gap could be lessened.

Lisa Croen, the director of the Autism Research Program at Kaiser Permanente, comments “A lot of adults with autism feel lost. It’d be great if physicians had some more general training and awareness. Just like with any other condition, they really have to take into account that particular person in their office and adjust what they’re doing to meet the needs of that patient.”

Health Challenges Often Increase Over Time for Those with ASD

As children with ASD age into adults their health can worsen and they are at a higher risk to develop autoimmune diseases, hearing impairments, obesity, sleep disorders, gastrointestinal issues, schizophrenia, depression, and attention deficit hyperactivity disorder. A robust healthcare system is required to provide appropriate care, however many EDs lack proper training and staff doesn’t feel confident to treat patients with ASD.

Lack of Understanding of Autism Leads to Patients not Visiting When they Need to

In 2015, when Croen conducted a survey of hundreds of primary care and mental health providers, this is exactly what she found. “They told us that they need more resources and training to work with adults with autism,” Croen says.

This causes those with ASD to avoid the ER when they really need treatment.

A developmental psychologist at the Vanderbilt University in Nashville, Tennessee, Julie Lounds Taylor says, “This is a huge issue; we see adults who still go to their pediatrician because there just aren’t enough providers for general care or psychiatrists who will see adults with autism. The challenge is: Can you find someone who will take you, and can you find someone who will provide competent care?”

Edward Jauch, director of emergency medicine at the Medical University of South Carolina, comments, “People on the [autism] spectrum utilize the healthcare system more often. They disproportionately are using our services. From a cost standpoint alone, it makes sense to figure out how to care for them effectively and efficiently.”

Simple Ways to Make Your ED the Gold Standard for Autism Care

Better Training for ED Staff

Staff knowledge and approach is the most important factor to focus on when making improvements in your ED regarding autism care. They are the ones who interact face-to-face with patients and with the right tools, their care could make all the difference in delivering a positive experience to those with autism. Their interactions are constantly going to either help to de-escalate a person with autism or escalate them to a place where they are no longer able to interact effectively, compromising diagnosis and treatment.

By providing better training for your ED staff you will equip them with the knowledge, skills, and confidence they need in order to improve patient experience and clinical effectiveness. When your staff is properly trained they will understand how to create comfortable environments for those with ASD and be able to determine the type of personalized care they require.

Environmental Adjustments

Making environmental adjustments can have an instantaneous impact on how comfortable patients with ASD feel when coming to your ED. These changes can be as small as making calming objects, such as toys and iPads available or using dimmer lighting. Improvements could also include having separate, quieter waiting rooms for patients with ASD where they can receive the attention they require while feeling safe.

People with Autism Need to Know Your ED has Training

Many people with autism and their families choose not to disclose that someone has autism. This is despite the fact that knowing about an autism diagnosis and the particular sensitivities of that individual can objectively increase the quality of care.

So why do people hold back this information? In the experience of many families sharing this information sometimes makes the situation worse and sometimes makes it better, so it is a decision made on a case by case basis depending on how important they think it is in that situation. This lack of understanding in healthcare creates even more anxiety for these individuals and their families because of this lack of certainty around how well they will be understood or treated.

That is why it is so important to not only do training and make environmental adjustments but to properly communicate to the public that your emergency department has made those efforts. That way individuals with autism and their families will seek out your facility and feel confident in disclosing their diagnosis and the relevant details needed to effectively treat them.

Credible Training, Environmental Adjustments, and Communication

There’s only one place that offers the ability to do training, environmental adjustments and communicate those efforts through a verifiable third party-certification program to the world. Certification allows emergency departments to show that their staff has gone through training, they have had their site evaluated and made reasonable adjustments, and they are now properly prepared to treat individuals with autism. After certification is completed, their efforts are shared directly with the autism community as well as with the public to ensure that people in the autism community know they have a place to go where they can trust.

This enables people to be more confident about sharing their diagnosis and the relevant details so that it can increase the quality of their care, knowing that they will be properly understood.

You can find out more about ED training through IBCCES here.

As Cara Harwell, a nurse practitioner at Nemours says, “I would probably drive a further distance if it meant going to a hospital with better-suited care.”

Other Benefits of Autism Training- Simplifying Treatment and Reducing Costs

1 in 4 children with ASD are sedated or restrained when using the ER to help soothe them.

However, sometimes something as simple as giving them a squishy toy delivers the same results. Due to this, when EDs are well-equipped to accommodate individuals on the spectrum, they can lower the cost of care because children don’t need to be medicated and they might even be more receptive to treatment.

Fareed Fareed, the medical director of the emergency department at HealthAlliance Hospital in Kingston, New York, shares a story of a young boy who came into the ER with burnt fingers. He recalls that the boy was timid and afraid when Fareed tried to look at his injury. When Fareed offered the boy a pinwheel and an iPad his demeanor quickly shifted.

“He was instantly more relaxed — not as guarded,” Fareed says. “It was much easier to examine his fingers and treat the burn.”

Provide Families With Peace of Mind

Bella Montalvo, mother of a 10-year old son with ASD in Orlando, Florida, shares her experience of bringing her son into the Nemours emergency department various times throughout the years. Due to her son’s diagnosis, he has difficulty articulating how severe his pain is and describing where exactly it’s occurring.

  • “Knowing there’s a special waiting room with calming toys and my son’s favorite TV shows is a huge relief.“ Montalvo says. “It was a weight that had been lifted off my shoulders.”

Families can rest assured knowing that they are in good hands and trusting that your ED understands their loved one’s diagnosis.

“There’s a better understanding of why the child is behaving a certain way — why the child is not responding,” says Montalvo. “They know how to handle it better.”

Become a Leader in Healthcare by Becoming a Certified Autism Center

When your ED is providing excellent care for those with autism, you will stand out because, unfortunately, this isn’t the industry standard yet. To help make your efforts known, the ED is great for marketing campaigns to get the word out, especially for those with smaller budgets and limited resources.

“Since all of our hospitals have EDs, we could do advertising across the board for all of our hospitals,” says Andrew Mills, the media relations manager of Columbia Healthcare Corporation’s Georgia division, which started its own marketing campaign for its EDs. “Not all of our facilities have cardiology or obstetrics — The ED is the common denominator.”

Almost as important as having an ED that is sufficient in handling patients with ASD, is being able to communicate this ability to the public.

“We look at our ER as a window of opportunity to get people into our hospital and see what quality service we provide,” says Mills. “If they have a good experience there, they’re likely to come back to us in the future.”

The silver lining is that there are actions EDs can start taking to help make patient visits a more positive experience. Changes, such as, proper training for staff, environmental adjustments, and customized care plans can have a huge impact.

“There’s a growing need,” says Fareed. “It’s ensuring you’re meeting the needs of a segment of the population.”

To become a Certified Autism Center™ click here.

Learn More About Becoming a Certified Autism Center™

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