Interactive Autism Network at Kennedy Krieger Institute
Date Published: March 17, 2015
Sarah, 12, arrived in a psychiatric unit wearing a helmet to protect her when she banged her head. She frequently hit, bit herself, and refused to eat. She could not communicate or use the toilet. Previous hospital and residential treatment stays failed to help her worsening behavior. Was the potent mix of puberty and her severe autism to blame?
Fortunately, this 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 it was treated, she became calm and had no need of the helmet.
Hospital staff members, who were trained to work with children with autism, became suspicious of Sarah's craving of loud noise. They ordered a hearing exam, which found that Sarah was partially deaf. She was fitted with hearing aids. When her father said her name, she turned to him and smiled. By the time she left the hospital, she was learning how to sign and use the toilet. Later, she began to speak a few words.
Behavior As a Sign of Illness
That true story is extreme, but it highlights the serious problems that some children with autism spectrum disorder (ASD) face in having their medical, dental and behavioral problems diagnosed and treated. According to some researchers, a severe change in behavior is often "the canary in the coal mine" alerting others to an underlying medical problem, one that could be as commonplace as "constipation, tooth pain, or [an] ear infection."1
Sarah's case was unusual in that medical problems alone were the only factor contributing to her behavioral problems, said psychologist Robin L. Gabriels, PsyD, who included Sarah's story in an article she co-authored with child psychiatrist Matthew Siegel, MD, for Child and Adolescent Psychiatric Clinics of North America.2
Children with autism are at risk for mental health problems that can fuel challenging behaviors, such as attention deficit hyperactivity disorder, anxiety, obsessive compulsive disorder, mood disorders, and depression.1-3
About one in 10 children 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 a child away from his home and school.
Sarah's case raises several questions. How can children with no reliable means of communication let anyone know they're 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, which Dr. Gabriels directs. Previous health care providers had decided it was unnecessary to see a dentist during a psychiatric hospitalization.
Perhaps that might make sense for a child without autism, one who can tolerate a routine exam in a general dentist's office. But what about a child with extreme sensory sensitivities and communication difficulties, for whom a dental exam would be terrifying? Would his parents be able to find a dentist experienced with using social stories and picture schedules to explain procedures to him? Would he need to see a dentist in a hospital so he could be sedated? What if insurance won't cover dental sedation?
Sarah's hearing loss also had been missed before she came to the Aurora, Colorado, hospital. She had a habit of holding her hand to her ear and making a loud grunting noise. "That looked like classic autism," Dr. Gabriels recalled. While trying to teach her sign language, however, the hospital team noticed that she sought out loud sounds – and they began to question her ability to hear.
Decoding Behavior in People With Autism
Dr. Gabriels advises parents and doctors to be alert to any behavior changes in a child who cannot communicate easily. "You have to really read the child and pay attention, 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 might it be. 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 said.
"If you go to a provider who doesn't really understand autism, he just may assume the behavior is an autism symptom," said Dr. Gabriels, an associate professor at the University of Colorado Anschutz Medical Campus.
Attributing everything to autism is called "diagnostic overshadowing," and it occurs when people assume a child's aggression, self-injury or sleep problems are caused by autism. That is a serious mistake, according to the article by Drs. Siegel and Gabriels: "It is simply not normal or typical, however, for children with ASD to repeatedly strike themselves or others."2
Assuming that "autism is causing everything" could even limit a child's ability to receive intensive treatment. Some insurance companies, for instance, will not approve a psychiatric hospital stay for a child unless he has been diagnosed with another psychiatric condition, in addition to autism.2
Getting to The Right Diagnosis
Cheryl Hammond knows how hard it can be to get the right diagnosis. Her son began experiencing developmental problems as a preschooler in the 1990s. He had difficulties with eye contact, behavior, learning, sensory processing, and handling changes in his routine. He had brief hospital stays at ages 5 and 6 for behavioral challenges. He accumulated a handful of psychiatric labels, including bipolar disorder, attention deficit hyperactivity disorder and oppositional defiant disorder.
But it wasn't until age 11 – during a six-week stay in a different psychiatric unit – that doctors diagnosed his underlying condition of autism. Her son became very upset when furniture in the Ohio hospital was rearranged, which was a clue. A profound dislike of change, called an "insistence on sameness" in the American psychiatric manual, is a classic symptom of autism.5
Ms. Hammond said she hopes that the process of being diagnosed with autism – and receiving appropriate services – is easier today than it was in the 1990s. "I could be so much farther ahead with him if professionals had listened to me from the beginning," said Ms. Hammond, a participant in the Simons Simplex Collection autism research project. "When he got the correct diagnosis, it made everything fall into place," she said. Her son began attending a school for students with autism, which was a better fit.
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.
Dr. Gabriels has worked to develop an interview tool to help health care providers tease out the most important details of a child's medical history from parents. The Iceberg Assessment Interview tool aims to uncover whatever is beneath the "tip of the iceberg," or the main behavior problem. This clinical interview tool, which has been submitted for publication, should make it easier for providers to elicit important information from families and develop an effective treatment plan for a child with ASD, Dr. Gabriels said.
Last Stop on the Journey
Entering a special psychiatric unit for autism is often the last stop in a long journey for children 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 Before she landed in Dr. Gabriels' NSC unit, Sarah had been admitted to a general psychiatric unit where she received multiple medications, all to little or no avail.
General psychiatric units may not be ideal for children 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 Dr. Gabriels and others.4 Staff in these units may use procedures that are troublesome for people with ASD, such as relying heavily on spoken directions and explanations, using long time-out procedures, expecting quick responses, or moving closer to a child when he's upset.2
The Children's Hospital Colorado program that treated Sarah is one of nine similar units that have formed a U.S. research network, the Autism and Development Disorders Inpatient Research Collaborative. These programs are tailored to the special learning and behavioral needs of children with developmental disabilities. The Colorado program, for example, weaves the principles of the TEACCH model of educating people with autism into its applied behavior analysis intervention program. The goal is to provide a structured environment that is more understandable and less stressful for children with autism.
TEACCH, developed 50 years ago by a psychologist at the University of North Carolina, stands for Treatment and Education of Autistic and Related Communication Handicapped children. The TEACCH model relies on visual supports, such as pictures, to make tasks and daily schedules easier to understand and predict.6 TEACCH also advocates dividing rooms into defined areas for certain tasks, such as learning or playing. People with autism often prefer predictability and a structured environment.6 The Children's Hospital Colorado program alternates preferred and less-preferred activities to motivate children throughout the day. It has special areas for practicing social, academic, leisure and self-regulation skills.
There are few studies comparing special psychiatric units for autism with general psychiatric units. One small study, by Dr. Gabriels and others, found that patients at her Colorado NSC program were discharged sooner than children in a general psychiatric unit – and they were less likely to be re-admitted to the hospital.4
At the end of her hospital stay, Sarah went home. That is remarkable only because some of her previous treatment providers, stymied by a lack of progress, had urged her parents to consider long-term institutionalization, Dr. Gabriels said. After her discharge, her father later reported that Sarah is actually a calm girl, when she not in pain.
- The Autism & Development Disorders Inpatient Research Collaborative (ADDIRC)
- Growing Up with Autism, edited by Robin L. Gabriels and Dina E. Hill. 2007. New York: The Guilford Press.
- King, B.H., de Lacy, N. & Siegel, M. (2014) Psychiatric assessment of severe presentations in autism spectrum disorders and intellectual disability. Child Adolesc Psychiatr Clin N Am. 2014 Jan;23(1):1-14. Abstract.
- Siegel, M & Gabriels, R.L. (2014) Psychiatric Hospital Treatment of Children with Autism and Serious Behavioral Disturbance. Child Adolesc Psychiatric Clin N Am 23 (2014) 124-142. Abstract
- IAN Community's ADHD, Anxiety and Autism?
- Gabriels, R.L., Agnew, J.A., Beresford, C., Morrow, M.A., Mesibov, G. & Wamboldt, M. Improving Psychiatric Hospital Care for Pediatric Patients with Autism Spectrum Disorders and Intellectual Disabilities. Autism Res Treat. 2012;2012:685053. Abstract.
- American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing.
- TEACCH Approach. University of North Carolina at Chapel Hill School of Medicine. Retrieved on 2/17/2015 from http://teacch.com/about-us/what-is-teacch.