Your child is neurodivergent. Should you tell everyone?

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Originally posted at Washington Post by Victoria Clayton / June 12, 2023

Pavel Tabutov’s family had been invited to a gathering near his Los Angeles exurb home to hear a friend’s daughter perform with her singing group. But it wasn’t a great night to go out. His three young kids were cranky, and it would be a crowded social event where the kids would need to sit still during a performance. Nonetheless, they went. “We wanted to support our friends,” Tabutov explains.

Days later, the friend who invited them told Tabutov that his child had been so unruly, she’d seen a flurry of texts complaining about it among the others who were there.

Tabutov’s 10-year-old has ADHD that can significantly affect his behavior. But Tabutov didn’t know many people at the gathering, and he certainly wasn’t going to announce his son’s presence along with his ADHD diagnosis.

Welcome to the complicated life of the neurodivergent — an umbrella term used to describe a variety of neurobiological conditions, such as ADHD, autism spectrum disorder, learning disorders and anxiety. While any child can have a bad episode, families with neurodivergent children tend to field more of them.

“I never would’ve wanted to be the kid who everyone knew is dyslexic or had ADHD. For our son, we are getting all the outside support we can, but socially we’ve been quiet about it,” said Tabutov, who is also neurodiverse. “We would never lead with, ‘Our son has disabilities!’”

After hearing from his friend, Tabutov phoned the hostess with an apology. He never mentioned his son’s severe ADHD, yet the incident has caused him to think hard about his position. Neurodiversity has taken on a new value and acceptance — last year, for example, LinkedIn started to offer “dyslexic thinking” as a skill users could add to their profiles.

But talking about it openly can also be problematic, particularly because children need agency over their own lives. And so parents are caught in a particular dilemma: Do they disclose their child’s diagnosis with the hope of educating and enlightening other people; do they wait for their children to decide what to disclose and when; do they keep quiet and continue to navigate sometimes difficult situations?

Grappling with disclosure The latest data from the U.S. Centers for Disease Control and Prevention shows that about 6 million kids have been diagnosed with attention-deficit/hyperactivity disorder (ADHD) and 1 in 36 children suffer from autism spectrum disorder (ASD). The Yale Center for Dyslexia and Creativity says a full 20 percent of the population suffers from the reading disorder dyslexia, making it the most common of all learning disorders.

While no disabilities and no children are alike, experts know that neurodiverse kids often suffer consequences because of a combination of their misunderstood behavior and the social stigma of owning the neurodivergence label. Not all neurodiverse children seek or qualify for special education services, but the Department of Education says roughly 15 percent of kids who attend public school do. Although services and special classes can help, there can be drawbacks.

“Even parents are sometimes thought of differently,” explains Monica McHale-Small, a mother of four neurodiverse children and a former superintendent of schools in Pennsylvania who is now the director of education for the Learning Disabilities Association of America. “At one time, people kind of looked at any disability as punishment for sin. I think most people have gotten over that thinking, but they still too often view it as a parental failure: You’re not a good parent if your child has a learning disability or ADHD.”

Historically, part of the stigma has even been tangled in racism. It’s true that many parents fight for a diagnosis and appropriate services for their children, but it’s also true that there’s a deep track record of misdiagnosing African American boys, in particular, as learning disabled and relegating them at a higher rate than others to inappropriate, special education classrooms that limit their futures, explains special education researcher Joy Banks, associate professor of education and human development at George Mason University.

“The bottom line is that despite some progress, the learning disability label — neurodivergence — is still seen as a deficit as opposed to being viewed as simply a part of the normal contingency of human difference. So the challenge is really getting [people] to understand that all kids have strengths,” Banks says.

The world is starting to wise up, though, according to Kate Griggs, a dyslexic mother of two dyslexic children who is now CEO of Made by Dyslexia, a nonprofit that aims to educate the public and teachers about learning disabilities. Griggs says seeing examples of successful neurodiverse people helps.

Megan Thee Stallion, Taylor Swift, Selena Gomez, Michael Phelps and many other high-profile people have publicly acknowledged neurodiversity like anxiety, depression, bipolar disorder and ADHD. Billionaire Richard Branson, movie director Steven Spielberg, actor Keira Knightley, California Gov. Gavin Newsom and others have also publicly acknowledged their learning disabilities. “Acceptance will only come when people start understanding that neurodivergent people can be truly successful. They offer a different and valuable way of looking at the world,” Griggs says.

Yet parents still must decide how to tread day to day.

“The first thing is to be clear about is that you’re trying to disclose because you want certain people to support your child,” says Jennifer K. Poon, professor of pediatrics and division chief of developmental-behavior pediatrics at the Medical College of Georgia at Augusta University. “Instead of your child being the difficult child or misbehaved child, the hope is that somebody would truly take the time to understand and say, ‘This child has ADHD, anxiety, autism’ or whatever the case is.” She says educating other people requires educating yourself first. It is important to talk to your pediatrician or, better yet, find one who specializes in neurodiversity. Poon also recommends the website Understood.org to help families better comprehend learning disabilities.

And make sure that once you begin to understand the diagnosis, your child does, as well.

“The biggest thing is to make sure you talk about it with your child first in a developmentally appropriate way. You want to be truthful about what you’re dealing with; you want to answer any questions and convey a sense that there’s no shame,” Poon says.

Maggie Storm, a Culver City, Calif., parent of two children with autism spectrum disorder, remembers being hesitant about letting her daughter know the diagnosis. She told her daughter, now a senior in high school, when she was in fourth grade. “It was like something switched on. She suddenly had a way to understand herself better,” Storm said. “Pretty soon, she was giving talks at her school about what it was like to live with autism.” Yet the real point, Storm says, wasn’t about disclosure exactly. “My goal was to help her understand her needs so she could advocate for herself better.”

It’s incredibly important for the person who is neurodivergent to have a say in who knows and who doesn’t.

“In my research, I’ve found that people with neurodivergence are successful when they carefully pick and choose. They decide who it’s safe to tell and who it isn’t,” said Alecia M. Santuzzi, a professor of psychology at Northern Illinois University who studies disabilities in the workplace. It’s called “reputation management” and Santuzzi acknowledges that “you can end up spending energy deciding who to tell, who not to tell and sometimes worrying about it.”

Despite this, experts say the reputation management model can be a healthy option for parents of neurodiverse kids. You want to ensure your child is proud of who they are and embraces their neurodiversity. But you also want to leave room for your child at some point to take over and decide for themselves whom they tell, Banks says.

Eventually, Storm’s daughter became so comfortable advocating for herself that she convinced her mother she needed an environment more conducive to learning for neurodiverse kids. Once she was at her new school, many of the symptoms ceased being problematic. Now there are far fewer instances when she even needs to discuss her neurodiversity.

And that, in the end, is what we need in society, Santuzzi says. “It keeps coming back to environment. We know from research that if we adjust environments to be far more tolerant and inclusive — and sometimes that’s things like lighting or noise or what’s required or tolerated in any number of situations — people with disabilities can usually fit in just fine.”

In other words, Santuzzi says, the ultimate solution is to make way for people as they are.

Banks says that if we look at the history of disability rights, especially the Individuals with Disability in Education Act (IDEA), it was signed into law only because parents began to protest. “There is still a need for social progress in the area of disability. There’s still a need for equal access and equitable access to resources and services. Parent advocacy can be powerful.”

As for Tabutov, he’s had a change of heart. “I’ve been thinking it over a lot. I don’t want other parents and kids to feel alone in this. My goal is to talk more about our struggles with disability. Not as an excuse, but for the sake of spreading awareness,” he says. “I also want people to recognize all the amazing abilities our son has. He’s smart, he’s capable, and he’s extremely creative. I think people will only be more tolerant and accepting if we’re open and honest.”

Victoria Clayton is a freelance writer in Los Angeles.