There is actually a word for this. Anosognosia means denying you have a medically diagnosed condition and not following doctors’ orders. Children with Asperger’s Syndrome, diabetes, and bipolar disorder commonly react with anosognosia. Diabetic teens typically go through several hospitalizations and insulin crises before they accept the fact they will have to spend the rest of their lives monitoring their blood sugars, injecting insulin, and following a special diet. No one, especially teenagers, wants to accept the idea a lifelong disorder will make him or her different from peers. They often take three to five years to process a diagnosis such as diabetes or Asperger Syndrome.

Anosognosia and Asperger’s

Anosognosia is an “aggressive” reaction to diagnosis, but children and teenagers can have other kinds of reactions classified as passive, negative, internal, or external. A passive reaction is, “My doctors and parents should take over my life because I have autism.” A negative reaction is about dwelling on the worst aspects of the condition. People who react “externally” look for their condition in other people. We need to teach teens and children to react “assertively “and embrace the diagnosis while taking control of their struggles.

Many children go through a gamut of emotions such as anger, fear and denial. Young children may be frightened and believe that having Asperger’s means they are sick and may die. Some feel isolated, as if they are the only ones with this problem. Others are angry to be singled out to have a neurological disorder. Finally, many children go through a period of anosognosia. They believe that if they try hard enough and ignore their doctors, they can be just like everyone else.

For many children with Asperger’s, the diagnosis may be a relief. Usually both the child and his parents finally and gratefully understand they are not to blame for the child’s problems. Many children are grateful that it’s “just” Asperger Syndrome because they had come to believe they were insane. Even if there is some relief, denying the diagnosis is usually an initial reaction that subsides after the child and his parents have time to process their thoughts.

Anosognosia and Parents

If anosognosia occurs, it is more common in parents than the child diagnosed with Asperger’s Syndrome. This is one reason most Aspies do not receive their diagnoses until after they enter school — i.e., parents ignore the signs. The preschooler’s average to high intelligence and good verbal skills can mask the problems of social interaction until she spends all day in a classroom with other children.

In addition, when doctors or other professionals diagnose Asperger Syndrome, parents often deliberately choose to skip medical treatment. If the child does not have glaring educational handicaps, then accepting special services at school doesn’t seem necessary. Many parents do not want their child to have a “label” and become part of the population in special education classes.

How Doctors Can Help Minimize Anosognosia

Some experts believe that the way a family gets the news about their child’s diagnosis determines how they accept it. Dr. Tony Attwood is one of the leading experts on this condition and has developed a method of explaining autism to children over age eight. Believing that “the person will perceive the diagnosis based upon how the clinician explains it,” Dr. Attwood advises doctors to be as positive as possible. They should start out by saying, “Congratulations! You have Asperger Syndrome! You’re not bad or crazy; you just have a different way of looking at the world!” The next step is to point out famous people who probably had high functioning autism and lived successful lives such as Albert Einstein and Thomas Jefferson.

Dr. Attwood advises doctors to divide a large sheet of paper or blackboard into two sections. One column would be a list of attributes of Asperger Syndrome, such as “an obsessive interest in one subject.” The other column would be the positive aspect of that attribute, such as “advanced knowledge, ability to concentrate for long periods of time, attention to detail.” Instead of mentioning social deficits, a doctor would point out people with Asperger’s often develop a unique sense of humor and make extremely loyal friends.

Luke Jackson, a thirteen-year-old author with Asperger Syndrome, believes adults should tell children about their condition as soon as possible. “You (doctors) may think you are doing them a favor if you can’t fit them neatly into your checklist of criteria and say they haven’t got it,” Luke writes. “It just muddles them up more and makes them think they are even more freakish.” He and others believe that getting the diagnosis is only a positive experience because you can learn what worked for others, you can qualify for services at school, and you can get professional help from mental health clinicians.

Advice for Parents

Authors Patricia Bashe and Barbara Kirby are both parents of children with Asperger Syndrome. They tell parents that while receiving a diagnosis of Asperger’s can be devastating, things will eventually get better. They write, “There may never be a time when you won’t look back and say who your child might have been without Asperger Syndrome. However, when the shock wears off, and it will, you will realize that this is the same child you have nurtured and loved since birth.”

References

Amador, Xavier. I am Not Sick! I Don’t Need Help! (How to Help Someone with Mental Illness Accept Treatment). New York: Vida Press, 2007.

“Asperger Syndrome Information and Features (AS-IF)”, a website for Asperger Syndrome from the United Kingdom, posted as http://www.as-if.org.uk/index.htm

Attwood, Tony (PhD). “Should You Explain the Diagnosis to Your Child with Asperger Syndrome?” The Asperger Syndrome and High Functioning Autism Society, posted at http://www.ahany.org/ShouldYouExplainTheDiagnosis.htm

Bashe, Patricia and Barbara Kirby. The Oasis Guide to Asperger Syndrome. New York: Crown Publishers, 2005.

Bolick, Teresa (PhD). Asperger Syndrome and Adolescence (Gloucester, MS: Fair Winds Press) 2004.

Frances, Nelle. “Asperger Child’s Emotional Well-Being.” Posted at http://www.lazarum.com/2/en/articles/articles_view.php?idarticulo=95#opciones

Garay-Sevilla, G; J. M. Malacara, A. Gutiérrez-Roa and E. González. “Denial of disease in Type 2 diabetes mellitus: its influence on metabolic control and associated factors” Diabetic Medicine, Volume 16, Issue 3, March 1999.

Jackson, Luke. Freaks, Geeks and Asperger Syndrome (London: Jessica Kingsley Publishers) 2002.