To Tell or Not to Tell

Nick Dubin

I cannot count the number of times I have been asked (or heard others asked) whether or not parents should tell their child that he or she has Asperger Syndrome. I will give my opinion in a moment, but first I want to address how this is relative to empowering victims.

Tim and Ted are children with Asperger Syndrome, both 14 years old. They don’t know each other, but they live only a few miles apart. They were both diagnosed with Asperger’s at age 12 and are often bullied at school. The main difference between them is that Tim’s parents have decided not to tell him he has Asperger’s while Ted’s parents have told him. Every day when Tim is bullied, he internalizes it and blames himself. He knows something is different about him but he can’t put his finger on it. This sense of always wondering why he is different creates depression. Ted is also depressed. His parents told him that he has Asperger Syndrome, and he thinks it’s a death sentence. He rationalizes that others bully him because he has a “disease” that makes him repellent to the other children.

Playing devil’s advocate, I have given two entirely different arguments why it is not good either to withhold a diagnosis or to disclose it. In my professional life, I have met practitioners who strongly advocate for disclosure as well as those who are vehemently against it. One can argue reasonably either way. Withholding the diagnosis can cause much confusion and turmoil. When episodes of bullying take place, Asperger children know they are different but the lack of any real understanding can create a negative self-image. On the other hand, sharing the diagnosis may label the child as “defective,” and he or she could become even more depressed after receiving that information.

However, Asperger Syndrome is nothing to be ashamed of. It is not a death sentence, nor is it a character defect. The fact is that Asperger Syndrome is a neurobiological difference. It results in perceiving the world through a slightly different lens than others. Many people have speculated that Thomas Jefferson and other notable geniuses may have had Asperger’s. There is no shortage of brilliance among the population (Ledgin 2002). Along with this brilliance and uniqueness come differences from the general population. Unfortunately, those who have differences (or stick out in a crowd) are usually the ones who suffer the most from peer abuse while growing up.

Of course not everybody with Asperger Syndrome is a genius, but most people with Asperger’s who I’ve met have some kind of unique personality traits, interests, or talents. Gail Hawkins (2004) states that these unique qualities have led to some of the greatest contributions to society. Gillberg (2002), a noted author on autism, agrees that people with Asperger Syndrome are a tremendous asset to the world. And yet, these same individuals are the ones who often suffer themost peer abuse in childhood, simply because they are different.

Children have a right to know that their differences actually have a name. The name does not define their entire being but it does serve to provide some additional information for self-knowledge. While many children resist being diagnosed and may not even want to talk about it, these same children could continue to suffer from confusion and depression simply because they don’t understand that their differences come from a group of traits that they were born with.

If parents withhold the diagnosis from their child, they should expect that eventually their child will discover this truth later in life. People generally need to acquire selfunderstanding in order to gain greater self-acceptance. The diagnosis of Asperger’s can be the information that helps to accomplish this objective. If a child is not told about this diagnosis, a reasonable assumption the person can make when learning of the diagnosis later in life is that there is something wrong with having Asperger’s. For example, if I was diagnosed at age 12 but didn’t learn about my diagnosis until adulthood, I would wonder why my parents withheld this information from me. Was there something bad about having Asperger Syndrome that my parents didn’t want me to know?

By disclosing the diagnosis to your child, you are letting him or her know that Asperger’s is nothing to be ashamed of. You are taking away the confusion and pain of not knowing the answer to the age-old question, “Why me?” Instead, you are empowering your child with the knowledge that being a little different could be the greatest gift the Asperger child can have. As my friend Michael John Carley, president of the Global and Regional Asperger Syndrome Partnership (GRASP), has stated, even if he were given the option to become a neurotypical, he would refuse to take it. He likes being different.

Nick Dubin is currently pursuing a doctoral degree at the Michigan School of Professional Psychology. He has produced DVDs on AS and is the author of the following books, published by JKP and available through the AANE web site:

  • Asperger Syndrome and Bullying: Strategies and Solutions (from which this article was excerpted)
  • Asperger Syndrome and Employment: A Personal Guide to Succeeding at Work
  • Breaking through Hidden Barriers