Approach with Care
As more children are diagnosed with autism, nurses learn how to respond to their needs
By Rebecca Ray
March 14, 2005
When 16-year-old Timothy was staying at the hospital for a head wound, he kept hitting his head against his hand. But for almost three weeks, the hospital workers only thought to give him medication to control his behavior. If his mom had thought to ask about his medication, and if the health care workers had thought to ask her about his behavior, they would have learned that Timothy, who is autistic, was in pain.
Although the medical community knows much more about autism than it did a few decades ago, incidents such as Timothy’s are all too common. Most medical professionals receive little training on how to interact with autistic patients or intervene in their treatment. This is especially unfortunate, considering that many more children are being diagnosed with autism than just a decade ago.
However, by observing developmental disorders, medical professionals can assist patients in getting the help they need, according to the federal Centers for Disease Control and Prevention, which recently launched a campaign to educate health care professionals on identifying children at risk for developmental disorders as early as possible. By learning about autism and keeping an open dialogue with the autistic patient’s caregivers about the course of treatment, nurses can learn how to appropriately interact with autistic patients, as well as how and when to intervene.
Autistic disorder is one of the autism spectrum, or pervasive developmental, disorders, which are characterized by “varying degrees of impairment in communication skills, social interactions, and restricted, repetitive, and stereotyped patterns of behavior,” according to the National Institute of Mental Health. Symptoms usually show by age 3 and, in some cases, have even appeared as early as the age of 18 months.
Autism spectrum disorder, or ASD, ranges from the most severe form, called autistic disorder, to the mildest form, Asperger syndrome. If the child has symptoms of either disorder, but does not meet the criteria for either, the diagnosis is pervasive developmental disorder not otherwise specified (PDD-NOS), according to the NIMH. Other rare, severe autism spectrum disorders are Rett syndrome and childhood disintegrative disorder.
On the rise
In the August 2003 Journal of Autism and Developmental Disorders , Eric Fombonne, MD, Canada research chair in child and adolescent psychiatry at McGill University in Montreal, estimated the prevalence of autism, or autistic disorder, to be somewhere between nine and 11 per 10,000 people. This is quite a jump from the estimate of two to five cases per 10,000 listed in the fourth and most recent edition of the Diagnostic and Statistical Manual of Mental Disorders , published by the American Psychiatric Association in 1994.
No one knows the reason for the rise in prevalence. Although better screening can explain some of the increase, it can’t tell the whole story.
Scientists generally believe that autism is triggered by genetic factors that cause abnormalities in brain structure or function. Researchers at the Regional Autism Center at The Children’s Hospital of Philadelphia have found a mutation on the X-chromosome associated with Rett syndrome, according to Margaret Souders, RN, MSN, CRNP, pediatric nurse practitioner at the Regional Autism Center.
The public has also shown interest in a theory that links autism and thimerosal, a mercury-based preservative used in the measles-mumps-rubella (MMR) vaccine. In May, a national panel of the Institute of Medicine released its final report that concluded there was no relationship between autism and the MMR vaccine or thimerosal. However, the Autism Society of America, a grassroots organization, says more research is needed. As a precaution, all routinely recommended vaccines for infants in the U.S. are now either thimerosal-free or contain only trace amounts, according to the Food and Drug Administration.
Early intervention
One thing medical professionals do agree on is that children with autism should receive intensive early intervention. The lifetime net financial cost savings per individual who receives intensive early intervention is between $2.5 and $3 million, according to the Autism Center at the University of Washington.
Although the medical community generally believes there is no cure for autism, symptoms can be dramatically reduced. A minute number of autistic children who have received treatment are indistinguishable from their peers.
Intervention should be multi-faceted, says Beth Bullen, RN, BSN, psychiatric nurse at Strong Memorial Hospital in Rochester, N.Y., and the mother of two children on the autism spectrum. When children with autism are around preschool age, she says, nurses should try to hook them up with an early intervention program. Children with ASD may have somatosensory disturbances that include hypersensitivity to sounds, smells, touch, textures, and visual perception distortion and may have difficulties with commotion and crowds, according to an article that Souders co-authored for the November-December 2002 Pediatric Nursing . Autistic children often need speech therapy to learn the give and take of speech and occupational therapy, as well as work on the development of social skills, such as reading facial expressions.
Various treatment programs exist for autism: Applied Behavioral Analysis (ABA), Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH), Picture Exchange Communication Systems (PECS), Floor Time, Social Stories, and Sensory Integration, to name a few. Typically, effective programs build on the child’s interests, offer a predictable schedule, teach tasks as a series of steps, engage the child’s attention in highly structured activities, and provide regular reinforcement of behavior, according to the NIMH.
Kathleen Stimpfle, RN, emergency department nurse at Sacred Heart Medical Center in Spokane, Wash., parent of a young man with autism, and board member of the Spokane Autism Cooperative, says nurses should keep a resource notebook for parents that contains contact information for autism centers in the region, as well as other services.
Organized parents will call a medical facility ahead of time to let staff know what would make the visit easier, Stimpfle says. By the same token, she adds, nurses should gather information about autistic patients before their first visit by asking the caretaker what should be done to reduce the patient’s anxiety.
People with autism need a quiet, structured environment with as little distraction as possible. Nurses should take vital signs with a sense of calmness, even if they do it quickly, says Karen Clemmer, RN, BSN, PHN, a resident of Sebastopol, Calif., who is the mother of two boys with autism and an MSN candidate at the University of Washington at Tacoma.
Because it takes longer for autistic patients to process information, Stimpfle says, nurses should give them one instruction at a time and give them an extra 30 seconds to respond. In fact, she recommends tacking an extra 10 or 15 minutes onto an appointment. Lack of familiarity is stressful for autistic patients, she says, and rushing them would be one of the biggest mistakes a nurse could make. She adds that it helps to talk in a soft, low voice.
Parents and nurses should make things as predictable as possible, Bullen says, by having the patient see the same nurse during routine visits, always taking the same route to the appointment, and letting the patient know the routine ahead of time.
James Adams, PhD, president of the Greater Phoenix Chapter of the ASA, director of the Autism/Asperger’s Research Program at Arizona State University, and the father of a 12-year-old girl with autism, says that having the parent present during the appointment often helps the child stay calm, and that nurses and parents should remain composed even when the child is screaming.
Autistic children’s behaviors, such as hiding under tables, can look like the children are misbehaving, but the last thing they need is discipline. The children are acting out because they don’t feel safe, Clemmer says, and need reassurance.
Caroline Wilson, RN, BSN, PHN, president of the Los Angeles Chapter of the ASA and autism advocate, educational consultant, and coordinator, advises against touching patients who are hypersensitive to touch. Nurses shouldn’t try to engage patients in eye contact either, Clemmer says, because they will cower more.
When drawing blood, nurses can use EMLA Cream to numb the puncture site. Adams also recommends showing videos to children during long waits.
Wilson says nurses should tell autistic patients what to expect and use simple explanations. They should also find out how patients learn best and observe their behavior to make sure they’re not in pain.
Wilson believes that nurses can be the biggest advocates for autistic patients, whether by affecting policy or simply listening to parents and providing sources.
“Nurses get it,” she says.
Rebecca Ray is an editor and writer for NurseWeek.