I grew up during a time when there was a stigma attached to labels, including ADHD and autism spectrum disorder. It was originally believed that ADHD was the result of mild brain damage in infancy, earning the syndrome the label of “minimal brain damage,” which was later changed to “minimal brain dysfunction” when researchers proved that theory to be incorrect. From there, it became known as hyperkinetic syndrome of childhood until it was renamed ADHD in 1980. Similarly, ASD was originally considered a form of childhood schizophrenia, which was believed to be the result of cold, unemotional mothers. The name also changed in 1980, when autism became a separate diagnosis known as a type of “pervasive developmental disorder.” A mild diagnosis was recognized in 1987, and the concept of a spectrum was introduced in 1994.
Psychologist Jennifer Pritt says that over the past five to 10 years, not only have people changed their views about these labels, but as they become more aware of what an official diagnosis can do for their children, they have become more willing to seek out that label.
Labels come with benefits
Being identified and labeled early can change the trajectory of a child’s life, according to psychologist Cindy Graham.
“A lot of studies have looked at children who had access to therapy at different points in time and what it does,” she says. “Regardless of the level of severity, the earlier you start with intervention, the better the outcome will be.” To do that, though, your child will need to meet certain criteria determined by either your school district or the state, depending on their age, and you will need to label your child.
Heidi Donato and her husband began this process for their son Brandon when he was approximately 19 months old. He received an ASD diagnosis near his third birthday. Brandon is now a senior in high school, and Donato believes that without his label, he wouldn’t have received the services, including speech therapy and a one-on-one aide, he needed to be successful.
“Brandon was a kid who never spoke, but through speech therapy and a lot of intense instruction, he was able to give a speech in front of 300 to 400 people at his sixth-grade graduation,” Donato says.
The most obvious practical benefit of labeling is gaining access to public school services, according to Pritt. While availability may differ by state, children can receive an Individualized Education Program or a 504 plan that provides things such as preferential seating or an aide in the classroom.
“It’s like HIPPA — you don’t have to tell anybody,” Donato says. “It’s only for your educators at school. But you are doing your kid a disservice if you refuse the services. Why not give them the building blocks and a good foundation?”
Sarah Fetter, whose four young children have all received an ASD diagnosis, knows that her children’s supports — including behavioral therapy, occupational therapy, speech therapy and respite — provide them the skills they’ll need to become independent adults. Through these services, her children have learned social skills, sensory strategies and coping skills; they’ve improved their speech; and they’ve worked on mental-health and emotional issues.
“If I didn’t provide them help and support now, I would be providing help and support when they are adults and for the rest of their lives,” she says.
If you don’t label your child, other kids will
Madison Beresford was the “weird kid,” bullied throughout high school. He didn’t receive his ASD diagnosis until he was 32.
“You name it, and just about everything that could’ve been said was said,” he says. “I was just barely surviving socially.”
Allison Treacy, who was diagnosed with autism spectrum disorder when she was 25, was also the weird one, and the smart one. Plus, she “spoke funny” because of a lisp and a clicking noise she sometimes made between words. She believes the teasing hurt a lot more than being told she was autistic would have.
“When you have an identifiable label, it’s much easier to promote empathy in meaningful ways,” Treacy says. “This isn’t to say, of course, that kids aren’t going to identify those ‘weird’ traits in their peers regardless, but identity is meaningful, even to children. They understand how grouping works and apply those patterns."
When Beresford and his wife, Becky, decided to tell their kindergartner, David, about his diagnosis, they wrote a script, shed a few tears and prayed. On that day, armed with David’s favorite cookies, they sat him down to watch a new episode of “Sesame Street” that introduced Julia, a 4-year-old with ASD. When the episode ended, they explained to their son that he also had autism. “Okay,” he nonchalantly responded. “Can I have a cookie now?”
Graham recommends that parents be straightforward, compassionate and loving — don’t “dance around the topic.” Pritt says that helping children understand they aren’t alone is also important.
“I often encourage parents to find a list of celebrities, sports stars, authors, inventors, etc., that also share their child’s diagnosis,” Pritt says. “Children often like to hear about others they can relate to.”
Build their self-esteem by helping them understand their strengths and needs. Parents often turn to therapists for assistance. But many, such as Beresford, also believe that peer groups play a critical role.
“Autistic people are not sick, we are not broken, but we are different, and it’s okay to embrace that,” he says. “Having a sense of self and a positive understanding of their own identity, that is what a label does. It gives them a place to belong and take pride in themselves.”
Next, parents should teach children how to advocate for themselves in the classroom, which can begin as soon as the child can understand the concept of classroom accommodations.
“If your kindergartner tells you they took a test, ask them if they took it in the classroom with everybody else and if they had enough time to finish,” Graham says. “Then remind them that they are allowed to take it in a separate room and have extra time if they need it.”
The final step is encouraging self-advocacy among their peers, but what they disclose, and to whom, is up to them.
“Kids shouldn’t feel like they have to explain their diagnosis or have to tell people about it because that is their own personal business,” says Graham. “But they shouldn’t have to hide it, either. However, they should be aware that if they do say something, people may tease them. But being teased for their label is no different than any of the other various things kids are teased about.“
Gia Miller is a freelance writer in Katonah, N.Y. Find her on Twitter @GiaMiller79.