Date Revised: August 18, 2022
Sarah, 12, arrived in a hospital psychiatric unit wearing a helmet to protect her when she banged her head. She frequently hit others, bit and scratched herself, and refused to eat. She did not speak or have another way to communicate. Previous stays in a hospital and a residential treatment center failed to help her worsening behavior. Was the combination of puberty and her severe autism to blame?
Fortunately, her stay at a special unit of Children’s Hospital Colorado would be different. A dental exam found that Sarah had a black molar and a life-threatening jaw infection. The pain must have been unbearable. As soon as this was treated, she became calm and had no need for a helmet.
Hospital staff members, who were trained to work with children with autism, became suspicious of Sarah’s craving for loud noise. They ordered a hearing exam, which found that Sarah was hard of hearing. She was fitted with hearing aids. Soon afterward, when her father said her name, Sarah turned to him and smiled. By the time she left the hospital, she was learning how to use signs to request things.
Behavior as a Sign of Illness
That true story is extreme, but it shows how medical and dental conditions may be misinterpreted as behavior problems in youth with autism. According to some researchers, a severe change in behavior is often “the canary in the coal mine” alerting others to look for an underlying medical problem, one that could be as common as constipation or an ear infection.1
Sarah’s case was unusual in that medical problems alone were the only factor contributing to behavioral problems, says psychologist Robin L. Gabriels, Psy.D., the founder of the Children’s Hospital Colorado unit that treated Sarah. Gabriels and child psychiatrist Matthew Siegel, M.D., included Sarah’s story in an article.2
People with autism are more likely to have mental health problems that also can fuel challenging behaviors. They may have attention deficit hyperactivity disorder, anxiety, obsessive-compulsive disorder, mood disorders, or depression.1-2
About one in 10 youth with autism will be admitted to a hospital psychiatric unit by age 21, usually because of aggression, injuring themselves, or tantrums.2 They will stay in the hospital longer than children who don’t have autism, on average. These stays can be very expensive and take the patient away from familiar home and school routines.
Sarah’s case raises several questions. How can children with no reliable means of communication let someone know that they are in pain, and where it hurts? Are we ─ health care providers, teachers, and parents ─ too quick to attribute challenging behaviors to autism, when they might be symptoms of something else?
Sarah came from a small community, and small communities may not have doctors and dentists who specialize in treating patients with autism or intellectual disability.
In fact, she had never seen a dentist before her admission to the Children’s Hospital Colorado Neuropsychiatric Special Care (NSC) program.
Sarah’s hearing loss also had been missed before she came to the Colorado hospital. She had a habit of holding her hand to her ear and making a loud grunting noise. “That looked like classic autism,” Gabriels recalls. But when staff also noticed her craving of loud sounds, they realized that she needed a hearing exam.
Decoding Behavior in People with Autism
Gabriels advises parents and doctors to be alert to any behavior changes in someone who cannot easily tell them what hurts. “You have to really pay attention to the child and their behavior patterns, because they’re not going to tell you what’s wrong. If there’s a change in behavior, you need to start thinking about what it might be and what is the underlying context. What are their baseline autism symptoms? If there’s a change from that, if they are starting to bang their head, or they become more energetic or more irritable, then going to see an autism specialist would be useful,” she says.
“If you go to a provider who doesn’t really understand autism, the provider may assume the behavior is a symptom of autism,” Gabriels says.
Wrongly assuming that every behavior, including self-injury and aggression, is the result of autism is called diagnostic overshadowing. That means that the autism diagnosis seems to overshadow, or prevent, consideration of other possible medical and psychiatric conditions. That is a serious mistake, according to the article by Siegel and Gabriels. “It is simply not normal or typical, however, for children with ASD [autism spectrum disorder] to repeatedly strike themselves or others,” they explained.2
Assuming that “autism is causing everything” could even limit a child’s ability to receive intensive treatment or medical care. Some insurance companies, for instance, will not approve a psychiatric hospital stay for a child unless he has been diagnosed with another mental health condition, in addition to autism.2
Certainly, arriving at any diagnosis – as well as puzzling out the cause of a challenging behavior and an effective treatment – requires expertise, training, and skill.
A Mother Searches for the Cause of a Behavior Change
Jackie Kancir, a participant in the SPARK autism research study, knows from experience about the link between medical problems and behavior. Her 18-year-old daughter, Jadyne, has severe autism and a seizure disorder caused by a change to her SYNGAP1 gene. Sometimes a change in behavior may be the only clue that something is wrong.
Like some people on the spectrum, Jadyne has limited speech and trouble managing her emotions, which can sometimes cause aggression. During a recent two-week period, she had an unusual increase in aggressive behavior. She broke the nose of a behavior technician at school and bit her mother at home. “Why are we at this level of crisis all of a sudden?” her mother wondered.
“Whenever she is having a spike in behavior, we try to look at her vitals: her temperature, blood pressure, heart rate, and respiration,” Kancir says. But everything looked fine, and Jadyne did not complain about feeling bad.
Then, a school employee mentioned a problem Jadyne had when using the bathroom. So Kancir had Jadyne tested for a urinary tract infection. That turned out to be the culprit. Jadyne became calmer after she began taking an antibiotic for the infection.
Last Stop on the Treatment Journey
Entering a special psychiatric unit for autism is often the last stop in a long journey for some children and teenagers with severe behavior. Most children already will have tried psychiatric medication, day treatment programs, in-home services, and a stay in a general psychiatric unit.2
But general psychiatric units may not be ideal for people with autism or intellectual disability. These units usually “are not adapted for the unique learning styles, needs, and abilities of this population,” according to another study by Gabriels and others.3 Staff in these units may use procedures that are troublesome for people with autism, such as relying heavily on spoken directions and explanations, using long time-out procedures, expecting quick responses, or touching or moving too close to children when they are upset.2
The Children’s Hospital Colorado program that treated Sarah is one of a handful of similar units that belong to a U.S. network, the Autism and Developmental Disorders Inpatient Research Collaborative. Some of these hospitals also took part in the Simons Foundation’s Autism Inpatient Collection study, a sister study to SPARK.
The Colorado program, for example, uses behavioral therapy, an evidence-based autism treatment, with its patients. The goal is to provide an environment that is more understandable and less stressful for youth on the autism spectrum.
At the end of her hospital stay, Sarah went home. That is remarkable only because some of her previous health care providers had urged her parents to consider long-term institutionalization. After Sarah’s discharge, her father reported that Sarah is a calm girl, when she not in pain.
Interested in joining SPARK? Here’s what you should know.
Some of this information was first published on the Interactive Autism Network (IAN).
Photo credit: Getty Images
- See SPARK articles and webinar videos about challenging behaviors.