Doctors, counselors, educators, and other professionals are sometimes faced with the task of describing Asperger's syndrome (AS) to the parents of a newly diagnosed child, or to parent of a child who exhibits symptoms of high functioning autism. A diagnosis of a pervasive developmental disorder can be a trying experience, especially for parents who are not familiar with the spectrum of disorders. Because of this, professionals must consider the best way to describe the disorder to parents, including the characteristics, treatment, and modifications that may be necessary.
Understanding What's at Stake
Some parents whose children have just been diagnosed with Asperger's have already spent considerable time researching the disorder. For these parents, explaining the syndrome will involve answering their questions, suggesting behavior modification techniques, and pointing them toward support groups and resources. As an education or medical professional, your job is to provide information and support, but what happens when you have to tell a parent who is unfamiliar with the syndrome that his or her child may have AS?
First, it helps to understand that just as the child may be frustrated and challenged, so often the parents experience these same feelings in addition to fears of the unknown. They may not understand what a diagnosis of Asperger's really means for their child, so it's important to have a plan of action in place that not only educates the parents but empowers them to become advocates for their child.
Describing Asperger's Syndrome to Parents
Creating a plan of action should involve several steps. The more familiar you are with the terms, definitions, diagnosis, and treatment of this syndrome, the better job you'll do at conveying the information parents need to hear about their child's diagnosis.
- Educate yourself-You can't answer parents' questions and alleviate their fears if you aren't knowledgeable about the topic.
- Build a team-If possible, have a team of professionals talk to the parents. Team members might include a special education teacher, regular classroom teacher, clinician, physician, and other professionals. While gathering this many professionals together might not be feasible, try to have at least one other person in the room who can answer questions as well.
- Talk in layman's terms-Keep in mind that doling out unfamiliar words, such as "self-stimulatory behavior" can raise the level of fear in a parent's mind. Instead, begin by explaining as simply as possible what Asperger's is. Consider referring to some famous people who are believed to exhibit traits associated with the syndrome, such as Albert Einstein, Ben Franklin, Leonardo da Vinci, Bill Gates, Woody Allen, and Daryl Hannah.
- Make it personal-Once you've given the parents a breakdown of the definition of Asperger's, make a personal connection. Point out specific behavioral evidence that the child displays. It might be helpful to hand the parents a laminated check sheet that lists the broad range of characteristics associated with Asperger's. This will allow the parents to peruse the list and think about the different traits they've seen exhibited by their child.
- Draw a picture-Help parents visualize their child's autistic behaviors by describing them and then explaining how the behaviors fit the spectrum. Include the function of the behaviors, the child's typical responses in social situations, and examples of problems with social communication (taking things literally, failure to understand humor). Use specific examples.
- Plan together-It's important for parents to feel a part of their child's diagnosis and treatment. Discuss with the parents about the possible need for further testing to determine where on the autism spectrum their child's behavioral characteristics fall. If possible, include the child's pediatrician in the discussion.
- Offer hope-Probably the most important part of the conversation you have with the child's parents is the hope you can offer them for their child's future. A diagnosis of Asperger's syndrome is not a death sentence, but to a parent who first hears these words, the diagnosis may seem so. Your job as a professional is to guide parents toward the many avenues of support that are available to them and their child. These could range from local support groups, parent workshops, family therapy, individual therapy for their child, and the development of an IEP (Individualized Education Program) for their son or daughter which specifically states what accommodations and modifications must be administered throughout their child's academic career.
- Suggest helpful websites and reading materials-Give parents general handouts on Asperger's and autism, and in addition, hand them a list of helpful websites, such as Asperger's Society, and New Horizons.org.
Handling Parents' Reactions
Keep in mind that not every parent will react in the same manner to a discussion about Asperger's syndrome and their child. Some parents will need some time to digest the information, so be prepared to answer many more questions several days or even week after the initial conference. Others may react in a negative or even angry manner, or they may just refuse to accept the diagnosis of their child. These parents, too, may need several days or weeks to process all the information you have given them. Parents who do react negatively may be resentful of you-the person who has given them the news that their child exhibits characteristics of AS. If this is the case, be sure you give them the names of other professionals whom they can contact.
Offering Guidance and Support
Finally, continue to emphasis the need for early intervention for children who have the disorder. Give parents contact information that specifically includes information on early intervention programs. While you might not hear back immediately from the parents, don't be surprised if they contact you sometime in the future to express gratitude for the help and encouragement you gave them at the beginning of this new journey they and their child will travel.