Sharing an autism diagnosis with your child
Parents of children with autism often struggle with why, when, and how to share the diagnosis with the child. The “why” part of this issue is clear: children deserve to know about themselves are and why they may struggle. Part of the process of defining our identity is self awareness. For this reason telling
your child about his diagnosis is important and should happen naturally with repeated brief conversations. Children who do not understand why they have certain challenges tend to think of themselves as weird or incompetent. Sensitively teaching about a diagnosis makes it less scary and gives the child power over the challenges. And while autism is a label of sorts it is not a limitation; moreover, autism does not define the individual. Rather than a diagnosis it is better to regard autism as a set of traits including strengths and possible challenges. This is a good place to begin a series of conversations with your child about an autism diagnosis.
The conversations should be appropriate to your child’s age and developmental level. Children age eight years and above are probably developmentally ready to understand basic information about autism. But keep the conversations straightforward and not overly detailed. Emphasize the child’s individual talents and abilities, and then discuss the special capabilities of people with autism. For instance, people with autism can “hyperfocus” and know a great deal about things that they are interested in. Identify heroes who may have been on the autism spectrum (such as Dan Aykroyd, Albert Einstein, and Leonardo da Vinci). Let your child know that the fields of computer science, math, and engineering are largely occupied by people with autism traits. Make sure to emphasize that no two people with autism are alike, they just share some traits. Explaining autism in terms of capability (such as great memory and an eye for detail) rather than disability will be less discouraging and more empowering.
Next, move on to explore specifics of autism spectrum disorder and let him or her realize that it is not an uncommon thing. One in 68 American children has autism (Center for Disease Control, 2014 statistics). If autism runs in the family, talk about this. Discuss how “Uncle Joe” has some of the same traits as your child. Children like to know they are not alone. It is also important to address the challenges of having autism. For example, it is harder to make friends, and flexibility of thought may be difficult. Many people on the spectrum have sensory sensitivities that make it hard to be out of “the comfort zone” of home. But be careful not to make it all about the diagnosis. Your child is first and foremost a unique individual.
Some children like to talk to others about autism. There are YouTube videos, blogs, and vlogs as well as books produced by people on the spectrum (for children, teens and adults). Explore these resources together. There is even a character on Sesame Street that has autism. Your child may want to talk to his class about it. Or his teacher may address it as a class wide presentation. Many teens and adults on the spectrum enjoy being part of what is referred to as “Aspie” or “nerd” culture. (Asperger Syndrome is an outdated term for someone on the mild end of the autism spectrum; hence the term “Aspie.”) The best way to regard autism is as a lens that can be used to understand one’s way of being. Make sure your child knows that while you will expect him to be the best he can be you accept and celebrate him just the way he is.