Coping With A Diagnosis Of Autism

Q. My sister has a two year old son that the family has concerns he may have Asperger's syndrome (a type of autism?). Although he has a vocabulary, he does not appear to react appropriately to others. He doesn't turn and acknowledge you when his name is called, does not complete a task, such as "Get the shoe, Give this to grandma, Where is the kitty" and does not make eye contact with the person talking to him.

My mother, a nurse and a mother of nine, my sister, also a nurse, and my sister-in-law, a teacher, have all tried to talk to his mother about this. As expected, she was very upset and refuses to believe that there may be a problem. My question is, is it appropriate to contact her pediatrician without her knowledge and inform the pediatrician of the family's concerns? I don't want to over step my bounds, break HIPPA regulations, however, if he does have this syndrome, the earlier detection, the earlier treatment allows for the best outcome. Dianne, Westlake, OH

A. Your nephew does have many signs that might indicate that he has autism or another communication disorder, including that he:

• does not respond to his name
• doesn't follow directions
• has poor eye contact

And from you describing that he is not appearing 'to react appropriately to others,' he likely has the signs of 'being in his own world' and 'not being interested in other children.'

You can take our autism screening quiz to see if he has any other signs or symptoms of autism.

Keep in mind that even though he does show some signs of autism, there are other medical problems that could cause the same symptoms, including not being able to hear well. In addition to a more thorough evaluation, a hearing test would likely be a good idea.

Diagnosis Denial

His mother's response to your suggesting that he has a problem like autism is not unusual. When faced with an issue like this, many parents go through all of the stages of grief, loss, or dying, as described by Dr. Elisabeth Kubler Ross. Although your sister hasn't suffered from her son dying, in thinking that he may have a problem, she is facing the loss of what she thought was a 'normal' child that was growing and developing without any problems. Many parents, whether they are having to cope with a diagnosis of cancer, ADHD, or Down syndrome, often go through this.

The first few stages in this process are denial and anger. People hopefully then progress through the stages of bargaining, depression or mourning, and then finally acceptance. However, as much as you would like to, you can't rush someone into accepting something like this. And instead of trying to convince her that her son has autism, you may just need to help her accept that he may have some developmental delays and needs an evaluation so that he can get caught up or so that they can figure out why.

Here are some resources that may help you:

• Understanding Autism
• From a Parent
• About Autism Forums

It may also help to find a local support group.

You could probably talk to your nephew's Pediatrician, as you are not bound by HIPPA regulations, but he or she would not be able to talk back. It may still be helpful if you discuss your concerns and then get your sister to take your nephew into the Pediatrician's office for a visit.