In the interest of your child's well-being,
Dr. Liz Matheis
By Pohla Smith / Pittsburgh Post-Gazette
The bright lights and noise in an emergency department or examination room can disturb and upset a patient with an autism spectrum disorder; so can the exam itself if the doctor does not use the proper approach.
Unfortunately, caregivers of patients with autism frequently report that a trip to the hospital can turn into a distress-filled struggle, getting in the way of proper treatment, according to a recently published online article by five emergency physicians, including three from Allegheny General Hospital.
Doctors need to understand autism, which is a range of complex neurodevelopment disorders, in order to help their patients, the article says. Overreacting to light, sound and touch is a common behavior found in people with autism. Some may not answer to their names and avoid eye contact with others. Responding to questions from a medical professional also may be difficult because people with autism often cannot interpret social cues such as tone of voice or facial expressions. Many children and adults with autism also make repetitive movements that may seem distracting during a medical exam or treatment, such as rocking and twirling, or that may threaten to harm themselves, such as biting or head-banging.
"Educational initiatives that make general physicians aware of the complexities of diagnosis and management of patients with an ASD are needed," the doctors write in Post Graduate Medical Journal.
"The rising prevalence of patients with an ASD makes it imperative that the general healthcare community becomes aware of the multidimensional nature of the ASD spectrum of illness."
The article, based on a survey of existing literature on how general physicians may handle patients with autism, provides common-sense tips on their care.
Most important, said lead author Arvind Venkat of Allegheny General, is "to listen to the caregiver and listen to the patient to the extent possible. They're very unique in how they interact. To take a knee-jerk approach and say this is how [doctors] react to a patient ... this is not the way to go. You really need to take time to talk to the caregiver to speak with [him about] how can we treat the patient in a way that's productive and not cause the conflict and stresses that we talked about."
That means finding out from the parent or caregiver techniques for touching the patient and what words to use, as well as what textures or smells that should be avoided.
It also means taking a detailed case history from both caregiver and patient, one that includes baseline behavior, communication ability, degree of sociability, dietary habits, pharmacological history, vaccination and menstrual history and sleep patterns, the article says.
Next important, said Dr. Venkat -- who has experience dealing with pediatric and adolescent patients from his medical training days and his emergency work -- is telling all the staff who will come in contact with the patient everything learned from the talk with the caregiver.
"The third part is you need to be willing to accept there are certain techniques that are very important ... an unorthodox way to approach the patient," he said. "You need to keep an open mind to approach the patient for his history and approach the patient in order to assess him."
The doctor should address the patient by saying something like, "I'm going to ask your mom how we can talk together," the article suggests. After the doctor speaks to the caretaker, he should repeat that to the patient, using his name to reinforce their direct relationship.
The doctor also should establish how the patient communicates yes or no either by asking directly or by showing how he can do so.
"I think the biggest thing is when you communicate with the caregiver, also communicate with the patient," Dr. Venkat said. "Multistep questions don't work with the patient. You need to be very methodical with the patient. Ask, 'Does your head hurt?' not, 'Does your head and back hurt?'
"When you're doing invasive treatment, make your patient understand the tactile and smell-related [aspects]. ... Allow the patient to feel the cast material [before applying a cast for a broken bone, for example]."
The article also suggests modeling things like splints or bandages on the caregiver or a stuffed animal and covering the materials with drawings or stickers for children or adolescent patients.
The doctor also should demonstrate each step of the exam on the caregiver or the stuffed animal.
Completion of tasks in the physical exam and diagnostic evaluation should garner rewards such as stickers or books.
The taste of medications should be considered; Pediatric formulas might be used for adult patients.
Doctors should watch for repeated movements such as swaying, tics or repeated phrases. "These behaviors can be comforting if the patient is in an agitated state," the article says. "If the behavior becomes rapid and intense in its repetition, it can also be an indicator that the person is about to become overwhelmed and explosive." If that happens, the patient should not be forced to stay still.
If possible, the exam should be done in a quiet room where the lights can be dimmed and equipment can be moved out.
The caregivers' beliefs also must be kept in mind, Dr. Venkat said. They often give their charges alternate therapies such as dietary supplements and other treatments such as chiropractic, acupuncture and neurofeedback and that must be respected.
"The parents that I've met are very invested, much more so than the [other] parents that come into the emergency department," he said. "The parents feel very, very involved with their child's care and are much more willing to question standard medical care. ...
"It's not being difficult. It's being an advocate for their family members."
Nevertheless, some alternate dietary therapies can have adverse side effects, and doctors have to be on the lookout for them. Most common are constipation or other problems with the gastrointestinal tract, which are frequently caused by the patient eating only certain foods, Dr. Venkat said. More rarely, the use of gluten-free and casein-free diets can place the patient at risk for nutritional deficiencies such as for vitamins A, B12 and thiamine, the paper says.
"You need to be prepared, not to question, but to be aware of side effects," Dr. Venkat said. "You have to point them out when they're causing harm to the patient, without being knee-jerk ... [but by] being much more diplomatic."
The other authors of the paper, which will be printed in the journal itself in a few months, are Candace Roman Crist and Robert Farrell, both third-year emergency medicine residents at Allegheny General, and Edward Jauch and William Scott Russell of the Medical University of South Carolina in Charleston.