How to “Deliver” a Diagnosis of an Autism Spectrum Disorder to Parents

November 11, 2009

It is usually traumatic when parents learn that their child has an autism spectrum disorder (ASD). Be clear about the diagnosis and let families know that treatment will begin as soon as possible, said Doris Greenberg, MD, associate clinical professor of pediatrics at Mercer University School of Medicine, Savannah, Ga. In her presentation at the US Psychiatric and Mental Health Congress in Las Vegas, Dr Greenberg discussed strategies for talking to the families of children with ASDs. “Don’t talk around the diagnosis-identify the elephant in the room and get on with it,” she said.

It is usually traumatic when parents learn that their child has an autism spectrum disorder (ASD). Be clear about the diagnosis and let families know that treatment will begin as soon as possible, said Doris Greenberg, MD, associate clinical professor of pediatrics at Mercer University School of Medicine, Savannah, Ga. In her presentation at the US Psychiatric and Mental Health Congress in Las Vegas, Dr Greenberg discussed strategies for talking to the families of children with ASDs.1 “Don’t talk around the diagnosis-identify the elephant in the room and get on with it,” she said.

The very first discussion about a diagnosis of ASD can shape the life of the family and the child, according to Greenberg. Greenberg has encountered parents who had very bad experiences when their child first received an ASD diagnosis. She said these stories taught her what not to do. Some parents reported that health care professionals immediately dismissed their fears; other parents were told that their child would never be able to live a normal life. “Parents tell horror stories,” Greenberg said, and their experiences engender additional and perhaps needless anxieties.

Explaining the diagnosis in clear terms is key. Greenberg often explains ASDs by comparing the mind to the computer formats of “DOS versus Windows.” Most people are born preprogrammed with something like a Windows application to read faces and seek interaction with others, she said. These people  enjoy novelty and change. Children with an ASD are not born with this application embedded in their brain, and so they work off of a DOS platform. These children do not “read” others-and have no theory of mind-the ability to understand what another person is thinking or feeling. They stick to a routine. A child with an ASD must be “programmed to do what is usually intuitive.”

When emphasizing the need to begin treatment immediately, explain that speech, language, and occupational therapy may be necessary to help the child manage activities of daily living. Recent studies have shown that patients with ASDs who were treated with early intensive behavioral intervention showed significantimprovement in full-scale intelligence and moderate improvement in adaptive behavior.2

“ASDs are lifelong disorders, but some patients improve greatly over time,” said Greenberg. “If you think a patient has an ASD, don’t wait-start treatment now!”

References:

References


1. Greenberg D. Autistic Spectrum Disorders. Presented at: US Psychiatric and Mental Health Congress; November 2-5, 2009; Las Vegas.
2. Eldevik S, Hastings RP, Hughes JC, et al. Meta-analysis of Early Intensive Behavioral Intervention for children with autism.

J Clin Child Adolesc Psychol

. 2009;38:439-450.