When and how should children be told they have autism? And what roles can and should we grandparents play in telling them?
It will be helpful if you are able to watch this 5-minute video before you continue reading this article: https://www.youtube.com/watch?v=vhODPVkFJJE
Hopefully you’ve now watched the video, so now here are nine things that may be helpful to you and your family regarding telling your grandchild that she has autism.
Determine WHO is the best person to initiate and continue this conversation with your grandchild. It should be a person whom your grandchild feels comfortable with and trusts and respects. In some families this person might be a grandparent. Even if not, it is helpful for us grandparents to be knowledgeable about this topic.
Start the conversation as SOON as possible – hopefully very soon after the diagnosis. The content of the initial conversations will depend on your grandchild’s age and cognitive abilities. For example, if your grandchild has been diagnosed at two years old and isn’t yet verbal and isn’t likely to understand words and sentences, you can still begin. Just as you say things such as “I love you,” you can also say things like, “I love you, and one of the reasons you are so special to me is that you have autism, and that means that you see the world differently from typical children. I am so excited to watch you grow and to learn things from you.” Again, even though a two-year-old isn’t likely to comprehend any of this, if you say it on a continual basis and gradually expand over the weeks and months and years, it won’t be a sudden surprise to your grandchild as his cognitive abilities get stronger. Always talk about autism in an upbeat way, and regardless of the age of your grandchild, the conversation should be ongoing rather than a single, major, two-hour session.
Start these conversations with your grandchild only after you are COMFORTABLE with his autism diagnosis and have worked through your own fears and doubts and anxieties.
You don’t want your grandchild to FIND OUT BY ACCIDENT that she has autism: overhearing a teacher, being told by a playmate, seeing a television show about someone like her, etc. Your grandchild’s healthcare workers, therapists, teachers, playmates’ parents, and many others will need to know that she has autism – and it’s not helpful for that knowledge to be hidden from her. If she starts asking questions such as, “Why do people say I’m weird?” or “Is there something wrong with me?” or “What is autism?” then you’re overdue in telling her that she has autism. But it’s great that you can now begin!
Initiate the autism conversation and have ongoing conversations only when your grandchild is calm and in a good mental and emotional state – not, for example, after a meltdown.
A good way to start is by discussing the fact that some persons are the SAME IN SOME WAYS AND DIFFERENT IN OTHER WAYS. For example, Grandmother wears glasses but Grandfather doesn’t. But Grandmother and Grandfather both like pancakes. Then, for example, “You and [playmate] are the same because you both like Peppa Pig. But you and [playmate] are different because purple is your favorite color and yellow is her favorite color.” Then let her know that all people are the same in some ways: everyone has times whey they are happy and also times when they are sad, etc. Then move on to the fact that everyone is good at some things but struggle with other things. Then, for example, “You are very good at dancing, but you sometimes need help going down a flight of stairs.”
Then proceed to talk about your grandchild’s STRENGTHS AND CHALLENGES. Be specific and emphasize the strengths: “You are so good at smiling at people. It makes people feel good when you smile at them.” Be less emphatic about challenges: “Have you noticed that you sometimes try to run away from us?” Let your grandchild know that you will help with challenges: “Running away can be dangerous, but I will always be here to help you with this. Everyone has challenges and things that they are not good at, and it is wonderful when there are people who can help.”
When OLDER CHILDREN first learn that they have autism, it is often a relief. They now know why they feel different, why they are treated differently, and why they may have difficulty making friends. Learning that they have autism can help eliminate their feelings of failure, of inadequacy and guilt, and of low self-esteem. And it can eliminate their wrong ideas such as having a terminal disease or being from another planet. The knowledge allows them to become more self-aware and able to understand their identity.
Let your grandchild know that every person with autism is different from all the others, and that the autism community is big. You may be able to name other persons whom she knows or knows of who have autism.
BOTTOM LINE – The sooner and calmer and more upbeat you can start talking to your grandchild about her having autism, the better. Sometimes grandparents – because parents often have more hectic and time-consuming challenges - are the ideal persons to lead these conversations, but even if not, grandparents can be empowered by their grandchildren’s parents to participate in meaningful ways.
P.S. – As we all know, every person with autism is different. You and your grandchild’s family are the persons who know her best and who can determine how best to have these conversations.
P.P.S. – A helpful project for many children is creating an ongoing artwork/poster entitled “All About Me.” There may be a photo or drawing of your grandchild surrounded by appropriate words and images.
And finally, I recommend watching the first ten minutes of this video: https://www.youtube.com/watch?v=x9heXsxLSHU&t=9s