Asperger Syndrome Presents Special Challenges for Nurses

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ASPERGER SYNDROME (AS) is a pervasive developmental disorder widely considered to be on the higher-functioning end of the autism spectrum. Persons with autism spectrum disorders, or ASDs, have significant difficulties with social interaction and communication, flexible thinking, and imaginative word play. Symptoms vary in type, frequency, and severity.

Though first described by Viennese pediatrician Hans Asperger in 1944, serious study of the syndrome did not begin until after 1981. We know today that AS and ASDs result from abnormalities in brain function and structure, not emotional trauma or bad parenting. Most persons with AS have limited access to psychiatrists, psychologists, and other medical professionals experienced with the disorder. Appropriate educational services and certain beneficial therapies are also hard to come by.

Although AS is considered rare, current estimates place the prevalence at one in 300. Given the alarming rise in diagnoses of all forms of autism — the California Department of Health, for example, found an increase of more than 210% between 1987 and 1998 — it’s likely that the AS rate will rise in coming years.

Patient Characteristics

Even if you haven’t heard of AS, you’ve probably treated people with the disorder. These are patients who as children might have been perceived as uncooperative, spoiled, or the product of poor parenting. Adult patients might avoid eye contact, fail to comprehend instructions, dress oddly, lack good personal hygiene, or talk about seemingly irrelevant subjects. While researchers continue to debate the diagnostic criteria, according to the Diagnostic and Statistical Manual of Mental Disorders, fourth edition (DSM-IV), the core features of AS include the following:

• Impaired use of nonverbal behaviors regulating social interaction
• Failure to develop age-appropriate peer relationships
• Lack of spontaneous interest in sharing experiences with others
• Lack of social or emotional reciprocity

Patients with AS can also exhibit an inflexible adherence to nonfunctional routines and rituals, stereotyped or repetitive motor mannerisms, and preoccupation with parts of objects.

These behaviors must be sufficient to interfere significantly with social or other areas of functioning. At the same time, there is no significant associated delay in cognitive function, self-help skills, interest in the environment, or language development.

Helpful as these diagnostic criteria may be, they fail to show what it’s like to be or deal with AS patients. They view the world differently. Some social behaviors, like using appropriate tone of voice or facial expression, are beyond them. AS patients also tend to see the world in black and white and may have difficulty carrying over what they learn in one situation to another. Indeed, they may seem to lack common sense.

Other common features include emotional lability and inappropriate responses to stress — for example, laughing at the sound of another child crying. They may exhibit motor clumsiness, have difficulty following directions related to physical movements, and have sensory integration problems that prompt strong, unusual responses to touch, smell, sound, taste, and visual stimulation. People with AS may also have trouble describing the degree and type of pain they experience.

Because most young children with AS don’t present with what we often regard as an autistic profile — they can be quite talkative, bright, and emotionally connected to family — many aren’t diagnosed until the early school years and far too many not until their teens or beyond. While there is no cure for ASDs, correct and timely diagnosis and an appropriate, intensive, multifaceted intervention program can vastly improve the patient’s quality of life and future prospects. It goes without saying that healthcare professionals should take seriously every parent’s concerns about unusual behaviors, developmental delays in motor skill development, and problems with socialization among peers. In these cases, a full neuropsychological workup, not a wait-and-see approach, is indicated.

Treatment Suggestions

Most people with AS find healthcare environments confusing and stressful. The following suggestions can be helpful:

• Try to accommodate patients as much as possible. Schedule visits when the office is neither rushed nor crowded and when waiting time will be short.
• Keep transitions to a minimum. Rather than move patients from station to station, try to do everything in one place. Keep them informed so that they know what’s about to occur before it happens — for example, “Now I’m going to listen to your chest with this stethoscope.” Offer to give patients a moment to touch or look at the equipment and ask questions about it.
• Make patients comfortable — this will dramatically reduce stress. Individuals with AS may feel extremely uneasy at being undressed, exposed to fluorescent lighting, or having to sit on paper. Find alternatives, such as letting them remain dressed as long as possible, using a room with incandescent lighting, or having them sit on clothing.
• Arrange for urine collection at home. AS patients often have particular toilet habits and may be unable to produce a specimen on demand.
• Have people with AS talk about a special interest, since this can help them relax. Be prepared, though: Hobbies and interests can run the gamut from the typical (computers and video games) to the bizarre (electrical pylons, collections of bleach bottles).
• Be clear and direct if you must stop the conversation — AS patients may not be able to infer this from your facial expression, body language, or tone of voice. In the same vein, when speaking to AS patients, use simple language and sentence structure. Avoid sarcasm and metaphor, and speak in a calm, relaxed manner.

Treating children with AS presents a particular challenge. Since parents know their kids better than you, take your cue from them. If they tell you, for example, that children must be restrained in drawing blood, listen. Trying it the typical way might set off a tantrum or panic attack.

Even in difficult moments, young AS patients generally will do better in the presence of parents. Never ask mothers or fathers to wait outside. Remember, too, that while rewards and inducements — lollipops, for example — work with most kids, they may hold no interest for children with AS. Finally, keep in mind that some parents and researchers feel that there’s a connection between autism and the immune system. These parents may refuse to have their children immunized or may request that immunizations be delayed or be given in divided doses rather than in combination.

Promising Drug Therapies

Pharmacological treatment of some AS symptoms has shown great promise in recent years. Anxiety and depression are the symptoms most often treated, along with obsessions, compulsions, attention deficit, and violent or self-injurious behaviors. Less commonly treated symptoms include delusions, hallucinations, sleep problems, nervous tics, and seizures.

Adults and children with AS are at risk for severe depression and suicide. Drugs most often prescribed include antidepressants — including tricyclics and selective serotonin reuptake inhibitors — stimulants, neuroleptics, atypical neuroleptics, mood stabilizers, anxiolytics, and antihypertensives.

For patients with AS and their loved ones, every day presents countless challenges and seemingly endless stress. As medical professionals on the front line, nurses have a unique opportunity to influence and greatly improve the medical care and comfort of these very special people.

Barbara Kirby and Patricia Romanowski Bashe are coauthors of a forthcoming book, The OASIS Guide to Asperger Syndrome. OASIS, which stands for Online Asperger Syndrome Information and Support, is a website (www.aspergersyndrome.org) founded by Kirby. Both women are parents of children with AS. Phyllis Class, RN, is editor of the Florida edition of Nursing Spectrum.

Bibliography

Attwood T. Asperger Syndrome: A Guide for Parents and Professionals. Philadelphia, PA: Jessica Kingsley Publishers; 1998.

Klin A, Volkmar FR, Sparrow S, eds. Asperger Syndrome. New York, NY: Gilford Press; 2000.

Myles BS, Southwick J. Asperger Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage, and Meltdowns. Shawnee Mission, KS: Autism Asperger Publishing; 1999.

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