Wells, a single mother in Fayetteville, Arkansas, was afraid of hurting Molly’s feelings. At the time, a little more than a decade ago, Wells considered autism a bad word and thought many others did, too. But Molly’s speech therapist encouraged Wells to have the discussion. So when Molly was 12, Wells talked to her about her autism. She explained what Molly’s condition was, why she was different from other kids and why learning would be more difficult for her than it is for many of her classmates. “I admit I fumbled through it,” she says. Molly, it turned out, wasn’t hurt. She was relieved “to have an explanation for why she was so different, to have a name for it. You want to know why you’re different from other people,” says Wells, who went on to become a licensed counselor who specializes in working with people with autism spectrum disorder, or ASD, and their families. In 2015, she founded AbleTalks, an organization that helps establish independent educational opportunities for young adults with autism and other disabilities.
Wells’ experience is common. For the parents of children with ASD, deciding when and how to talk to their child about his or her condition can be difficult and fraught with emotion. Many parents, like Wells, don’t want to hurt their child’s feelings; they worry their daughter or son will feel stigmatized and that his or her possibilities in life will be limited. Some parents worry their child will use the condition as an excuse to avoid achieving in school and beyond. While these are understandable anxieties, many children with ASD feel a sense of relief when they learn there’s a reason they’re different from other kids, experts say.
Those differences vary with each child with ASD. Autism spectrum disorder impairs a child’s ability to interact and communicate with others, according to the Mayo Clinic. Common ASD behaviors include failure to respond to one’s own name, poor eye contact and lack of facial expression, a resistance to cuddling or holding, not showing emotions and inappropriate and at times aggressive behavior with others. People with ASD may have repetitive body movements, such as rocking, spinning or hand flapping; an obsessive attachment to objects like rubber bands or keys; a preoccupation with a topic, such as numbers or maps; and a strong need for routine. Around one-third of people with autism remain nonverbal, and about an equal percentage have an intellectual disability. About 44 percent of children diagnosed with ASD have average to above-average intellectual ability, according to the Centers for Disease Control and Prevention.
The most obvious signs of ASD tend to appear between ages 2 and 3, and the average age of diagnosis is 4. About 1 in every 68 children has ASD, according to estimates from the CDC’s Autism and Developmental Disabilities Monitoring Network. As many as 3 million Americans live with autism, according to Autism Speaks, a global advocacy organization that supports people with autism and their families.
The prospect of talking to your child about his or her ASD can be daunting for any parent. To prepare for the discussion, experts offer these strategies:
Reach out to other parents. Joining a support group for parents of children with ASD or forging friendships with such mothers and fathers can help you prepare for talking with your child about his or her autism, says Lisa Goring, chief program and marketing officer at Autism Speaks. “It can be helpful for parents to talk through with other parents what approaches have worked,” she says.
Generally, talk to your child sooner rather than later. “A parent has to decide when the right time is, but a child needs to have an understanding of why they are different and why some things are harder for them,” says Amy Alvord, education director at the Ivymount School in Potomac, Maryland. The school serves students and young adults with autism spectrum disorder and related conditions, and also provides services for their families. Talking to kids about their ASD “builds self-awareness and contributes to building self-determination skills critical for a successful transition to adulthood,” Alvord says. Such talks can also help kids with ASD understand why they have difficulty making and maintaining friendships, why they’re provided special accommodations at school and why it may be harder for them to learn or retain learned skills.
It’s a good idea to get ready for the conversation earlier than you think you need to, adds Sarah Kuriakose, clinical director of the Autism Spectrum Disorder Clinical and Research Program at NYU Langone Medical Center in New York City. “I’ve talked to too many parents who thought the conversation was several years away, and then find out that a classmate, sibling or even stranger has told their child they have autism! Or, the child has been looking up the topic on their own. Many young adults with ASD express they wish they’d been told earlier, and that knowing they were on the spectrum was critical in their process of understanding and accepting themselves, versus wondering why certain things were difficult for them.”
Strike a calm demeanor. Your child is likely to take emotional cues from you, so it’s important to maintain a calm tone, says Rain Newbold-Coco, a board certified behavior analyst with doctoral training in Melbourne, Florida, and the mother of a 4-year-old with ASD. Newbold-Coco talked to her son about his ASD when he was 3. “You want to be cautious you don’t have this catastrophizing tone, because the child may start to internalize that something is wrong with him or her,” she says. “Your approach should depend on your relationship with your child. If you have a light, bantering style of communicating, that may be the way to go. Open it up for questions.”
Take advantage of ASD resources. Newbold-Coco introduced her son to the concept of ASD with the help of a Sesame Street storybook about Julia, a character with autism. She also showed him videos, such as one featuring a young girl diagnosed with autism talking about what she’d like neurotypical kids — a term used in the autism community to refer to people with typical neurological development –to know about her condition. “My child is an auditory and visual learner,” Newbold-Coco explains. “I See Things Differently: A First Look at Autism,” an illustrated book that helps explain what autism is to kids, also helped her son understand his autism, she says. You can find a wealth of books and videos about ASD with an online search.
Keep things simple and strike a balance. Avoid using clinical language, says psychologist Matt Segall, an assistant professor of psychiatry and behavioral sciences at the Emory Autism Center at Emory University School of Medicine in Atlanta. “For example, a parent might talk about a ‘hard time making friends’ as opposed to ‘challenges creating and sustaining peer relationships,'” Segall says. “There should be a balance between [talking about] strengths and weaknesses. Individuals with autism often possess wonderful strengths such as excellent memories, [they can be] highly visual, highly logical, with an orientation towards fairness and following rules, with unique ways of seeing the world or problem- solving.” Parents should also be clear that having ASD is not an excuse for misbehavior or poor performance. Says Segall: “Having this conversation is a wonderful opportunity for parents to remind children that everyone has various challenges and strengths.”
Ruben Castaneda is a Health & Wellness reporter at U.S. News. He previously covered the crime beat in Washington, D.C. and state and federal courts in suburban Maryland, and he’s the author of the book “S Street Rising: Crack, Murder and Redemption in D.C.” You can follow him on Twitter, connect with him at LinkedIn or email him at firstname.lastname@example.org.