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Parents Seek Help Discussing Autism with Newly Diagnosed 9 Year Old

"Our son, age 9, was recently diagnosed with autism. He knows something's up, but we’re not sure how to explain. Advice?"

This week’s “Got Questions?” answer is from psychologist Lauren Elder, Autism Speaks assistant director for dissemination science.

Yours is a difficult situation shared by many parents. Children need to understand what’s going on, but the discussion needs to be appropriate for their age and level of development. Your openness will help your child feel comfortable coming to you with questions.

I recommend a series of ongoing conversations rather than a one-time discussion. Here are some tips for starting the conversation and preparing some answers for questions that your son may ask:

Explain autism in terms of your child’s strengths and weaknesses
You may want to focus on what he’s good at, and then discuss what’s difficult for him. You can explain that his diagnostic evaluation provided important information on how to use his strengths to meet his challenges. Focus on how everyone has strengths as well as weaknesses. Give some examples for yourself, his siblings and other people he knows.

Provide basic information about autism
Depending on your son’s maturity and understanding, you may want to continue by talking about what autism means. (See our “What Is Autism?” webpage.) You want to give your child a positive but realistic picture.

It may help your son to hear that autism is common and that there are many children like him. This can open a discussion about the strengths and challenges that many children with autism share. You might likewise discuss how individuals with autism tend to differ from other children.

For instance, you might explain that many children with autism are very good at remembering things. Some excel at building things or at math. Also explain that many children with autism have difficulty making friends and communicating with other people.

Don’t make everything about autism
It’s important to emphasize that your son’s autism-related strengths and challenges are just part of who he is and why you love him. Be sure to point out some of those special qualities that have nothing to do with his autism. This will help your child understand that autism is something that he has, not the sum total of who he is.

Assure your child of support
Explain to your son why he’s receiving the services he’s getting. For instance, you could tell him that he sees a speech therapist to help him communicate more clearly, or that he's seeing a behavioral therapist to improve how he makes friends. Help him understand how you, his therapists and his teachers all want to help him. You can point out that we all need some help to become the best we can be. Some children need extra help learning to read. Some get very sad and need help in that department, etc.

Expect to repeat these conversations!
All children – and especially those with autism – need to hear some information multiple times. This doesn’t mean he doesn’t understand. what you've told him. Rather, revisiting these topics can be an important part of his processing the information.

Find role models and peers
It’s important for children with autism to spend time with typically developing peers. However, for children your son’s age and older, it can be a wonderful experience to spend time with other children on the autism spectrum. Consider enrolling your son in a play group or social skills group specifically for children with autism.

For more information, also see “Explaining the Diagnosis to your Child,” in the Autism Speaks Tool Kit on Asperger Syndrome and High-Functioning Autism.

Got more questions? Send them to GotQuestions@autismspeaks.org. Subscribe to Autism Speaks Science Digest to get “Got Questions?” blogs and all our research news and perspective delivered to your inbox.