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    Understanding the world of children with autism

    One day soon, in the ED or a pediatrics unit, you likely will care for a child with an autistic spectrum disorder. Here's what you should know to provide the services these special patients need.

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    After reading the article you should be able to:

    1. Describe the epidemiology of autistic spectrum disorder (ASD).
    2. Describe the signs and symptoms of ASD.
    3. Discuss the current treatment of ASD.

    Statement of Financial Disclosure for “Understanding the world of children with autism”:
    RN's editorial staff, including Patricia Lederman, Linda M. Roman, Anne M. Madden, and James Fraleigh have no relationships to disclose. Kay Ball, RN, MSA, CNOR, FAAN has reviewed this article and reports that she is a consultant with AHC Media LLC and a stockholder with STERIS Corp.



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    Originally Posted February 2008

    By MELISSA BEARD-PFEUFFER, LPN

    MELISSA BEARD-PFEUFFER retired from a nursing career in West Virginia to care for her three children, one of whom has autism. The author has no financial relationships to disclose. EDITOR: JUDITH-ASCH-GOODKIN. She has no financial relationships to disclose.

    One day soon, in the ED or a pediatrics unit, you likely will care for a child with an autistic spectrum disorder (ASD). Here's what you should know to provide the services these special patients need.

    Five-year-old Sammy is brought to the emergency department by his parents. When you first greet his mother at the triage desk, she reports that Sammy has been uncharacteristically quiet in the last few days, spending more time than usual alone in his room, hugging his favorite toy—an empty plastic juice bottle. You peer into the waiting room and see a normal-looking child sitting on his father's lap, staring at the floor, and rocking back and forth while clutching his "toy." Sammy's mother tells you the last time he behaved this way, he had an ear infection. When you ask, "Does Sammy say his ear hurts?" she replies, "Oh, Sammy doesn't talk. He has autism."

    What exactly does "having autism" mean? Autism, or autistic disorder, is a complex neurodevelopmental disability that typically appears during the first three years of life. It affects adaptation to social interactions and the ability to communicate and understand language.1 For a list of autism spectrum disorders and potential causes, see "What is autism?" following the references.

    Children with autism can be found in all communities, ethnicities, socioeconomic strata, and family lifestyles. The only variable that seems to correlate with autism risk is gender; the disorder is four times more common in males.2

    Overall incidence is staggering.1,3,4 While estimates of its prevalence are controversial, somewhere from one in 500 to one in 150 persons have a form of the disorder. Given that a diagnosis is made almost every 20 minutes, affecting roughly 67 children every day,5 it is likely you'll encounter patients like Sammy in your healthcare setting. You need to be aware that a trip to a doctor's office or the hospital can be traumatic to a child with autism. Understanding this disorder is the first step in ensuring successful care outcomes.

    Telltale signs

    ASD presents with individual variations in behavior, intelligence, and ability to function. The majority of children with autistic disorder will have many—but not necessarily all—of the following signs and symptoms:4

    • Marked impairment in nonverbal communication behaviors, such as eye contact, facial ex pression, and gesture
    • Delay or total lack of spoken language
    • Repetitive motor mannerisms such as hand or finger flapping or twisting
    • Lack of imaginative play
    • Inappropriate attachment to inanimate objects
    • Interests or movements that mimic obsessive compulsive disorder (OCD)
    • Lack of awareness of the child's surrounding environment
    • Laughing or crying at inappropriate times
    • Uneven gross and fine motor skills
    • Hyper- or hypo-responsiveness to sensory input: sound, smell, color, touch, and taste
    • High tolerance for pain
    • Difficulty understanding feelings of other people
    • Episodes of aggressiveness, to self and others
    • Seizures

    Children with ASD process information and respond to other people in unusual ways. When encountering such children, keep in mind that sensory dysfunction—the inability to organize and interpret sensory information accurately—may play a large role in their behaviors, affecting touch, hearing, smell, sight, and taste, as well as vestibular and proprioceptive sensations. Brain areas that normally receive sensory impressions have difficulty receiving information from the thalamus and brainstem, the processing areas of the brain.6 As a result, a sensation that would seem painful to a normally developing child may feel good to a child with autism. Conversely, a touch or sight or sound that seems pleasurable to children without sensory dysfunction may be intolerable to a child with autism.7

    Parents are the best resource you have for developing strategies that allow you to provide optimal care—especially when children present in the ED. Asking parents what works in a particular situation can not only reduce stress on the child, but also help to ensure prompt treatment and positive outcomes.

    Nursing interventions

    In Sammy's case, initiate care by minimizing the time he and his parents spend in the waiting room. Noise and confusion are likely to upset him, and some of his behavior may be disturbing to other patients. If Sammy and his family cannot be seen shortly, try to locate a quieter place, such as a private room, where they can wait.

    A detailed assessment is crucial. Speak with one parent while the other waits with Sammy. Ask, "Is he acting normal currently?" to determine if the child has a life-threatening illness or symptoms. Follow up with, "What would you like me to know about your child?" When taking his history, be sure to inquire out of Sammy's earshot: He may understand what you're saying and be embarrassed or frustrated that he is unable to participate. A list of dos and don'ts for nursing care of children with autism is below, followed by some additional strategies to implement, depending on the symptoms presented.


    Nursing care Dos and Don'ts

    Managing the senses

    Sight. Some children with autism have difficulty understanding spoken language.8 They may need to see an object, or a picture of an object, to understand what you want to convey, so if you're planning a procedure, you may get better comprehension using charts or pictures.

    A number of children use flash cards or picture books to communicate, while older, nonverbal children may be able to write what they need or want. A handheld electronic dictionary, laptop computer, or other electronic communication device often can be a useful alternative. Additionally, some nonverbal children with autism have been taught to understand and express themselves with American Sign Language; in that case, parents could be invited to sign and act as interpreters.6

    Touch. Should your patient have a heightened tactile sense, you need to be aware of the textures of materials such as IV tubing, dressings, towels, and linens. If possible, give the child a choice of fabric or dressing. Some children whose senses don't provide enough tactile input may enjoy the pressure of the arm boards that secure their IV sites. Hypersensitive children, on the other hand, may not be able to tolerate this feeling or the sensation of being touched by another person.

    It's good nursing practice not to touch a child with autism until you first explain what you're going to do and why you need to do it. With a device, the child may need to touch the object, fiddle with it, or put it in his mouth before letting you use it on his body.

    Sound. Loud noises can be excruciatingly painful to children with hearing sensitivities, and almost any noise level can seem too much.9 Keep the tone of your voice soft and calm, and never raise your voice to a child with sensory impairment. It can set off the fight-or-flight response.

    Be aware of noise in the environment—ringing phones, beeping IV pumps, loud TVs—that a child with autism may not be able to filter away, and do everything you can to minimize it. Anticipate his response, which may include zoning out or implementing behaviors to shut out the painful sounds, and ask his parents about successful strategies in similar circumstances.

    Smell. Children with heightened sensitivities to smell may need to sniff or smell you and other caregivers, as well as the objects around them, to feel comfortable. Avoid or limit use of certain foods, perfumes, lotions, cleaning products, or medications that could cause some children with autism to gag or vomit when confronted with them.

    Taste. A heightened sense of smell or taste can make mealtime an ordeal, at home and in the hospital setting. All foods may taste the same, or children may be extremely picky and have a very short list of food they're willing to eat. Your patient might be fussy about the color or texture of the item,10 like Sammy, who only eats white food, or he may be on a gluten-free, casein-free diet, which some caregivers feel helps to alleviate negative behaviors.7

    Other eating difficulties may be the result of developmental delay. Children may need to chew, lick, and bite objects as a way to explore them. Or they may prefer ingesting nonfood items such as dirt or sand, a condition called pica.10 About 30% of children with autism have this eating disorder11 and must be monitored closely.

    Controlling behaviors

    Flapping, blinking, and barking. When children with sensory dysfunction are over- or under-stimulated, they may find relief by self-stimulating behavior, or "stimming,"3,12 which can include twisting hands, flapping arms, blinking eyes, making funny noises, biting objects, or making any abnormal or repetitive movement. Monitor any child who is stimming to avoid safety issues—he may have poor posture and balance, be clumsy, or fall frequently.

    Assess the environment to determine the negative stimulus. Pull down the window blind to shut out the light, close the room door, or lower your voice. Sometimes, a child may be so involved in stimming that he doesn't even seem aware that you're in the room.3

    Reacting to change. Children with autism are deeply attached to their routines and easily distressed by change.13 The best way to help them tolerate change is to let them know ahead of time what's going to happen to them, and when. Assuring the children that their parents will be with them, and providing a written schedule that also includes pictures, may make the transition easier for them and for hospital personnel.

    Toileting. Problems with toilet training are frequent in this patient population. It is not unusual for a child with autism to be 6 or 7 years old before becoming completely continent. Expect to see children well beyond toddlerhood still wearing diapers or training pants.14Asking parents what regimen the child follows at home, and imitating it as closely as possible, is the best way to avoid regression.

    While you should always involve parents and guardians in every aspect of the child's care—and emphasize parent teaching in your nursing care plans—don't forget to call upon other members of the healthcare team for assistance. Services of child life specialists; occupational therapists; early intervention specialists, such as teachers and therapists; dietitians; music and art therapists; and psychiatric consultants may also help to alleviate your patient's anxiety.

    Drug therapy

    Children with autism are often prescribed antidepressants, antipsychotics, selective serotonin reuptake inhibitors (SSRIs), anxiolytics/sedatives, stimulants, alpha2-agonists, or beta-blockers to control such symptoms as aggression, self-injurious behavior, and severe tantrums.15 (A list of some of the drugs used in management of autism-related behaviors can be found at the end of this article.) In many cases, these medications are prescribed "off-label," as they are not approved by the Food and Drug Administration (FDA) either for ASD or for children.8 Sometimes, a combination of two or more medications in different categories are used. Children also may be prescribed additional agents for other conditions, including attention-deficit hyperactivity disorder (ADHD), OCD, depression, and seizures.

    Some parents believe a regimen of Vitamin B6and magnesium is beneficial in improving their child's ability to communicate, make eye contact, and have fewer tantrums.16 Research results on this therapy, however, are mixed.8

    Managing meds

    A child with autism does not always have to be sedated when visiting the hospital. Utilizing behavioral interventions suggested by parents or guardians may be sufficient to allow caregivers to assess his symptoms. However, in emergency situations, it may become necessary to sedate the child to stop him from injuring himself or others. In this case, physicians will rely on information obtained from the patient's history to determine the appropriate agent. Should a detailed patient history be unavailable due to the circumstances of an emergency admission, lorazepam (Ativan) or chlorpromazine (Thorazine) will probably be ordered. If haloperidol (Haldol) is used, the child's dosage should be adjusted and given with diphenhydramine (Benadryl) or benztropine (Cogentin) to reduce the likelihood of extrapyramidal reactions.17 Since these agents may not be those of choice for daily maintenance, and advocates for the child might not know how he will react, it is important for you to carefully watch for negative responses.

    Medication reconciliation is crucial. Make sure the child receives the same drug and the same dosage while he is in the hospital. Since most of these medications have documented hypersensitivity, any fluctuation in dosage needs to be supervised by healthcare providers. Check for any adverse interactions with other drugs prior to administering, understand the potential for side effects (like hypotension, tachycardia, and dependency) and the need to closely monitor for them, and always ask parents or guardians how the child takes medication at home. Follow any special routines that may make him feel more at ease. Giving medication at the same time of day, for example, may lessen the child's anxiety.

    You and your ASD patient

    The more you know about autism, the more competent you will be to face the challenge of caring for patients like Sammy. Fortunately, the healthcare team recognized that parental involvement was critical to understanding his behaviors, perceptions, and needs. Although Sammy was unable to express his discomfort, professionals asked the appropriate questions, and relied on the child's vital signs and an otoscopic exam, to determine a care plan for his ear infection that meshed with his existing regimen. Discharge was accelerated to return him to a more comfortable environment as soon as possible.

    With patience, understanding, and good communication with parents and caregivers, you too can help your pediatric patient cope with his illness and hospitalization—and turn the visit into a positive experience for all.


    REFERENCES

    1. Kennedy Krieger Institute. (2005). Autism spectrum disorders and pervasive developmental disorders. Baltimore: Author.

    2. Murphy, P., Colwell, C., Pineda, G., et al. "Breaking down barriers: How EMS providers can communicate with autistic patients." 2007. www.emsresponder.com/article/article.jsp?siteSection-&id=3232 (29 Nov. 2007).

    3. Powers, M. (2000). Children with autism (2nd ed). Bethesda, MD: Woodbine House.

    4. Centers for Disease Control and Prevention. "How common are autism spectrum disorders?" 2006. www.cdc.gov/nchddd/autism/asd-common.htm (2 Jan. 2007).

    5. Autism Speaks. "Fact sheet." www.autismspeaks.org/whatisit/facts.php (11 Dec. 2007).

    6. Simpson, R. (2005). Autism spectrum disorders: Interventions and treatments for children and youth. Thousand Oaks, CA: Corwin Press.

    7. Department of Health and Human Services, National Institutes of Health, National Institute of Mental Health. "Autism spectrum disorders with January 7, 2007 addendum." 2004. www.nimh.nih.gov/health/publications/autism/complete-publication.shtml (11 Dec. 2007).

    8. Grandin, T. (2006). Thinking in pictures. New York: Doubleday.

    9. Zelan, K. (2003). Between their world and ours: Breakthroughs with autistic children. New York: St. Martin's Press.

    10. Wheeler, M. "Mealtime and children on the autism spectrum: Beyond picky, fussy, and fads." 2004. www.iidc.indiana.edu/irca/medical/mealtime.html (2 Jan. 2007).

    11. Adams, J., Edelson, S., Grandin, T., & Rimland, B. "Advice for parents of young autistic children." 2004. www.autism.com/ari (2 Jan. 2007).

    12. Miller, L. J. (2006). Sensational kids: Hope and help for children with sensory processing disorder. New York: G.P. Putnam's Sons.

    13. Szatmari, P. (2004). A mind apart: Understanding children with autism and Asperger syndrome. New York: Guilford Press.

    14. Wheeler, M. (2004). Toilet training for individuals with autism and related disorders. Arlington, TX: Future Horizons.

    15. Hilt, R. J. "Autistic spectrum disorders." 2006. www.emedicine.com/med/topic3202.htm (23 Dec. 2007).

    16. Tilton, A. J. (2004). The everything parent's guide to children with autism. Avon, MA: Adams Media.

    17. Owley, T. B. (2004). Treatment of individuals with autism spectrum disorders in the emergency department: Special considerations. Clin Ped Emerg Med, 5(3), 187.


    What is autism?

    Autistic disorder is the most common of five conditions defined in the Diagnostic and Statistical Manual of Mental Disorders as "Pervasive Developmental Disorders," more commonly referred to as autism spectrum disorders.1 Others in this category are Asperger's syndrome, a milder form of the condition; pervasive developmental disorder not otherwise specified; Rett's disorder, which only occurs in girls; and childhood disintegrative disorder.1,2

    There is no single known cause for ASD, and the list of suspects is long. It includes genetic predisposition, obstetric complications, vaccines (especially MMR, the measles-mumps-rubella vaccine), toxic exposures, and a variety of other conditions including tuberous sclerosis, fragile X syndrome, congenital rubella syndrome, gluten intolerance, and Candida infection.3 The debate about the connection between vaccines and autism continues to rage, despite numerous studies and pronouncements that dispute this etiology.4,5

    A new study gives further credence to genetic predisposition, noting a specific DNA flaw that occurs near or during conception and sharply increases risk 10- to 100-fold. The spontaneous chromosome alteration—deletion of a region on Chromosome 16—appeared, however, in less than 1% of 1,500 children with the disorder.6

    Other recent research has focused on the benefits of the "fever effect," suggesting behaviors of autistic children greatly improve in the presence of high temperatures. Documented by parents for years, the phenomenon calls for further study to determine if beneficial effects from increased cytokine levels could lead to more effective treatment regimens.7

    Sources: 1. American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed.—text revision). Washington, DC: Author. 2. WebMD.com. "Understanding autism—the basics." 2007. www.webmd.com/brain/autism/understanding-autism-basics (23 Dec. 2007). 3. Murphy P., Colwell C., Pineda G., et al. "Breaking down barriers: How EMS providers can communicate with autistic patients." 2007. www.emsresponder.com/article/article.jsp?siteSection-&id=3232 (29 Nov. 2007). 4. American Academy of Pediatrics. "What parents should know about measles-mumps-rubella vaccine and autism." www.cispimmunize.org/fam/autism/a_faq.html (12 Dec. 2007). 5. Institute of Medicine, Immunization Safety Review Committee. "Immunization safety review: Vaccines and autism." 2004. www.nap.edu (11 Dec. 2007). 6. Carey, B. "Study says DNA flaw may raise autism risk." 2008. www.nytimes.com/2008/01/10/health/10autism.html?ex=1200632400&en=e859930af2805d2d&ei=5070&emc=eta1 (10 Jan. 2008). 7. Hamilton, J. "Autism study lends credence to 'fever effect.'" 2007. www.npr.org/templates/story/story.php?storyid=16956039 (31 Dec. 2007).


    Drugs used in management of autism-related behaviors

    Antipsychotics: risperidone (Risperdal), olanzapine (Zyprexa), clozapine (Clozaril), quetiapine (Seroquel), haloperidol (Haldol), chlorpromazine (Thorazine)

    Indications: Risperidone treats irritability in autistic children and adolescents aged 5 to 16. Olanzapine, clozapine, and quetiapine are used off label to treat aggression, hyperactivity, withdrawal, and other serious behavioral disturbances in children with ASDs. Haloperidol is prescribed to young autistic children very rarely due to the possibility of severe adverse reactions and unknown long-term effects.

    Antidepressants: amitriptyline (Elavil, Endep, others), bupropion (Wellbutrin)

    Indications: Antidepressants can treat behavioral symptoms as well, but the body of research is not as extensive as that for SSRIs and antipsychotics. Potential side effects must be weighed before treatment is begun.

    SSRIs: fluoxetine (Prozac), fluvoxamine (Luvox), clomipramine (Anafranil)

    Indications: Fluoxetine is the only SSRI approved for treating symptoms of depression and OCD in children seven years or older. SSRIs can decrease frequency of repetitive, ritualistic behavior and improve eye contact and social interaction.

    Anxiolytics/sedatives: diazepam (Valium), lorazepam (Ativan), alprazolam (Xanax)

    Indications: Although these medications have been used to treat ASD symptoms, their safety and efficacy in children with autism have not been proven.

    Stimulants: methylphenidate (Ritalin), amphetamine-dextroamphetamine (Adderall), dextroamphetamine (Dexedrine)

    Indications: Medications typically prescribed for children with ADHD have the ability to increase focus and decrease impulsivity and hyperactivity in those with autism. Potential side effects must be weighed and agents carefully monitored.

    Alpha2-agonist: clonidine (Catapres)

    Indications: Drug is FDA approved for lowering blood pressure but is also used off label to reduce symptoms of ADHD.

    Beta-blockers: nadolol (Corgard), propranolol (Inderal)

    Indications: With a limited role in treatment, these medications decrease aggression, self-injurious behavior, and hyperactivity. They are most beneficial to patients who are easily overaroused or those with poor frustration tolerance.

    Sources: 1. Autism Society of America. "Biomedical and dietary approaches." www.autism-society.org/site/PageServer?pagename=about_treatment_biomedical (23 Dec. 2007). 2. Department of Health and Human Services, National Institutes of Health, National Institute of Mental Health. "Autism spectrum disorders with January 7, 2007 addendum." 2004. www.nimh.nih.gov/health/publications/autism/complete-publication.shtml (11 Dec. 2007). 3. Hilt, R. J. "Autistic spectrum disorders." 2006. www.emedicine.com/med/topic3202.htm (23 Dec. 2007).