A conversation with your child about a developmental disability is a complex and sensitive subject, requiring significant consideration and planning. It’s no surprise that many families wrestle with details like how and when to broach the subject.
Some parents wonder if their child really needs to know about the diagnosis. Others feel compelled to share information sooner than later, especially as the child becomes increasingly aware of their unique differences and challenges. This was the case for Fishers mom, Jess W. and her son. Jess wanted to equip her child with the tools to understand his diagnosis as early as possible so he could begin to learn how to ask for help and access resources and support. At the same time, she didn’t want to bring up the subject too soon and risk overwhelming him. Ultimately, Jess decided to talk to her son a few months after his seventh birthday.
“For our family, our main priority was that our son would never feel limited by his diagnosis,” says Jess. “We choose to be positive in our interactions with him – not treating him differently because of his challenges. It’s important to us that he feels empowered to push himself beyond what others might see as a limitation. We wanted to honor who he is by being honest with him about his autism – we felt that hiding his diagnosis from him could convey that autism was something to be ashamed of, which obviously couldn’t be further from the truth. It’s just one aspect of the amazing kid he is.”
For parents who may be wondering how to best approach the topic, here are a few practical suggestions for talking with your child about his or her autism diagnosis.
Consider the best timing
Choose a time when everyone is calm and rested to introduce the subject. Consider discussing the idea through multiple small conversations over a period of time rather than one long conversation. It might be helpful to view the discussion as an ongoing talk about autism.
“Many adults with an autism spectrum disorder express the view that children should be given some information before they hear it from someone else and/or overhear or see information that they sense is about them,” says Marci Wheeler with the Indiana Resource Center for Autism. “A child may have the view that people do not like them and/or that they are always in trouble, but do not know why. If given a choice, waiting until a negative experience occurs to share the information is probably not the best option.”
Look for cues from your child
The Indiana Resource Center for Autism suggests preparing for a conversation when your child begins to observe differences about themselves and asks questions. Some children may already notice how other kids interact with people and realize that they have a different way of processing information. Helping a child understand their differences and become knowledgeable about their diagnosis can encourage him or her to access the resources and support available to them now and in the future.
Utilize resources to help
Take advantage of the many children’s books available on autism. Books can open the door to a general discussion about autism before shifting into the specifics of your child’s diagnosis. Using books, play or puppets first can be a non-threatening way to introduce the subject and ease into a conversation. Some families invite a trusted friend, religious leader or counselor to help facilitate the discussion.
Think carefully about what you will say
When talking with your child, remember to choose your words carefully, stay positive and use age appropriate language. Remain matter-of-fact and positive. Avoid using technical terminology or sharing too much information and overwhelming your child. You can always share additional follow-up information later. Allow time for your child to process the information, share concerns and ask questions. Taking into account your child’s perspective and emotions will improve communication.
Emphasize unique strengths and differences
Remind your child that everyone has differences and this is what makes us individuals. “Many families have found that setting a positive tone about each family member’s uniqueness is a wonderful starting place,” says Wheeler. “A positive attitude about differences can be established if you start as early as possible, and before the diagnosis is mentioned. Everyone is in fact unique with their own likes and dislikes, strengths and weaknesses, and physical characteristics. Differences can be discussed in a matter of fact manner as soon as the child or others their age understand simple concrete examples of differences. With this approach, it is more likely that differences, whatever they are, can be a neutral or even fun concept.”
Help facilitate connections
Seeking out camps, workshops and conferences for children who have an autism spectrum diagnosis can give your child opportunities to interact and connect with kids who have similar experiences. At the end of the day, many children on the autism spectrum are encouraged to simply know that they aren’t alone.
While talking with your child about their autism diagnosis may not be an easy conversation, thinking ahead about how and what you want to convey will set the stage for future positive discussions. By reminding your son or daughter that autism is just one component of who they are, and reinforcing the many qualities and attributes that make them special, you can help your child have a healthy perspective now and throughout their lifetime.