There is actually a word for this. Anosognosia means denying that you have a medically diagnosed condition and not following doctors’ orders. Children with Asperger Syndrome, diabetes and bi-polar disorder commonly react with anosognosia. Diabetic teens typically go through several hospitalizations and insulin crises before they accept the fact that 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 of a lifelong disorder that makes him or her different from peers. They often take three to five years to process a diagnosis such as diabetes or Asperger Syndrome.
Anosognosia is an “aggressive” reaction to diagnosis, but children and teenagers can have other kinds of reactions classified as passive, negative, positive, internal, external or assertive. A passive reaction is “My doctors and parents should take over my life because I have Asperger Syndrome.” A negative reaction is about dwelling on the worst aspects of the condition. This is the opposite of a positive reaction, which is concentration on the positive aspects of the disorder: “Asperger’s means I’m a genius!” People who react “externally” look for their condition in other people. Finally, people who react “assertively” embrace the diagnosis and take control of their problems.
Many children go through a gamut of emotions such as anger, fear and denial. Very young children may be frightened and believe that having Asperger Syndrome means they are sick and may die. Some feel isolated, as if they are the only ones with this problem. Still others are angry that they have been singled out to have a neurological disorder. Finally, many children go through a period of anosognosia. Such individuals believe that if they try hard enough and ignore their doctors, they can be just like everyone else.
However, if the child is over eight years or so of age, the most common reaction to a diagnosis of Asperger Syndrome is relief. Usually both the child and his parents finally and gratefully understand that 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 that they were insane. Denying the diagnosis is usually just an initial reaction that goes away after the child and his parents have time to think things over.
If anosognosia occurs, it is much more common in parents of children with Asperger Syndrome than in the children themselves. This is one reason that 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 services at school is not a clear-cut decision. Many parents do not want their child to have a “label” and to become part of the population in special education classes.
Some experts believe that the way a family gets the news about their child’s Asperger Syndrome determines whether they accept the diagnosis. Dr. Tony Attwood is one of the leading experts on this condition and has developed a method of explaining Asperger Syndrome to children over age eight years. 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!” and then, “You’re not bad or crazy; you just have a different way of looking at the world!” The next step is to point to famous people who may have had Asperger Syndrome 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 that adults often prefer children with Asperger Syndrome and that Aspies 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.
Authors Patricia Bashe and Barbara Kirby are both parents of children with Asperger Syndrome. They tell parents that while receiving a diagnosis of Asperger Syndrome 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.”
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.