Denying the Diagnosis of Aspergers

Anosognosia means denying that you have a medically diagnosed condition and not following doctors' orders. Kids with Aspergers, diabetes, alcoholism and bi-polar disorder commonly react with anosognosia. Diabetic adolescents 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 teens, 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 Aspergers.

Anosognosia is an "aggressive" reaction to diagnosis, but kids and teens 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 Aspergers." 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 kids go through a gamut of emotions such as anger, fear and denial. Very young kids may be frightened and believe that having Aspergers 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 kids go through a period of anosognosia. Such Aspies believe that if they try hard enough and ignore their doctors, they can be just like everyone else.

However, if the youngster is over age eight years or so, the most common reaction to a diagnosis of Aspergers is relief. Usually both the youngster and his parents finally and gratefully understand that they are not to blame for the youngster's problems. Many kids are grateful that it's "just" Aspergers because they had come to believe that they were insane. A period of denying the diagnosis is usually just an initial reaction that goes away after the youngster and his parents have time to think things over.

If anosognosia occurs, it is much more common in parents of kids with Aspergers than in the kids themselves. This is one reason that most Aspies do not receive their diagnoses until after they enter school (i.e., moms and dads 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 kids.

In addition, when doctors or other professionals diagnose Aspergers, moms and dads often deliberately choose to skip medical treatment. If the youngster does not have glaring educational handicaps, then accepting services at school is not a clear-cut decision. Many moms and dads do not want their youngster 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 youngster's Aspergers 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 Aspergers to kids 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 Aspergers!" and then. "You're not bad or mad, you just have a different way of looking at the world!" The next step is to point to famous people who had Aspergers 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 Aspergers, 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 kids with Aspergers and that Aspies have often develop a unique sense of humor and make extremely loyal friends.

Luke Jackson, a thirteen-year-old author with Aspergers, believes adults should tell kids 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 and all around 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 kids with Aspergers. They tell moms and dads that while receiving a diagnosis of Aspergers 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 youngster might have been without Aspergers. However, when the shock wears off - and it will - you will realize that this is the same youngster you have nurtured and loved since birth."

The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome


•    Anonymous said... ‎"Labels" are scary to people, especially children. It can be devistating to a child to see their parents perspective of "my child's not 'normal'". The destructive behavior that can go with this is unimaginable and affects everyone in the home. Knowledge & support are what our children need and desire.
•    Anonymous said... ‎"So how does a parent explain it to the child? My son is 10 and was dx'd at 6. We homeschool so it hasn't been an issue. I think he is noticing now and my husband and I are at a loss on how to explain it.
•    Anonymous said... I truly believe that my adolescent cousin has Aspergers. It's very frustrating because I don't think he has been diagnosed. His parents do not seem to care what he does. He has all of the symptoms. Kids and adults do not want to be around him because of the way he acts and they don't seem to realize that he has a problem he can't control. He does not have any friends at school and that really hurts me because I love him so much. His parents love him very much and is told everyday that they love him. I really wish they would get him help.

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Unknown said...

My 15yo who has Asperger's has this, she was diagnosed at age 12 and she has steadfastly refused to accept it and denies all her difficulties. It's a nightmare because she also refuses all diagnosis-related support and blames all her difficulties on others. If you have any research about this happening in autism I would be grateful.

Unknown said...

same here

Anonymous said...

My girl was just diagnosed at age 14. She refuses to accept it and feels she has nothing to work on. She blames me for trying to force things on her. I just want her to have a full life. I’m lost...

Anonymous said...

I know this is an old post but I am in the same situation currently. Could you tell me how your daughters doing now? I could really use some advice. Thanks.

Anonymous said...

Happy to see someone brought it up again. I think this will be a continuing issue. Our 18yo son has rejected his diagnosis when he received it four years ago. We just rolled with it but now he needs to figure out life and he can’t, but won’t ask for help because, well, nothing is remotely wrong and he has three hyper-focuses and doesn’t understand why he’s not ready to go to college. Sept. 4 Anonymous—we need to have coffee!

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