When special education teacher Tanya Dana’s young son was slow to learn to speak, she learned firsthand what the parents of her students go through.
Stigma, embarrassment, and even a “grieving process,” are all part of being the parent of child struggling with a disorder, Dana told a live local television audience Tuesday night.
Dana told her story as part of 21st Century Conversations, a monthly talk show produced by N’Zinga Shani that airs on Citizens Television. (See previous coverage here, here, here, here, here, and here. )
Dana, a West Haven elementary school teacher, was part of a three-person panel that tackled the topic of children and autism spectrum disorders, the umbrella term for a variety of social disorders that fall into the category of autism.
It was a timely topic, with autism on the rise at the rate of 17 percent per year, according to Alison McBride, one of the panelists and a psychologist in the West Haven school system.
Clinical Psychologist Pam Ventola, who works with autistic children at the Yale Child Studies Center in New Haven, had another startling statistic to share: one out of 150 people in the United States has an autism spectrum disorder.
“Autism spectrum disorder covers a range of neurological disorders,” said Ventola (pictured). “But it’s a social disorder at heart.”
Individuals with autism spectrum disorders have impaired social skills, Ventola explained. They can display symptoms like seeking or avoiding certain sensory experiences, engaging in repetitive behaviors, and avoiding interaction with people.
It is unknown what causes the disorder, which runs in families and is four times more likely to affect boys than girls. “It’s likely an interplay of genetics and environment,” Ventola said. “But beyond that we’re not sure.”
The good news is that autism is treatable, especially if it is diagnosed at an early age. Tuesday’s show was designed to send a message to parents, who were urged to look for signs of autism in their children and seek help if they see them.
“Early intervention is key for optimal outcome,” Ventola said.
Autism can be diagnosed at as young as 1 year old. The signs to look for, according to the panelists: repetitive actions like hand flapping or finger flicking, poor eye contact, patternized behavior, word repetition, and trouble socializing with other children.
The number one sign is delayed language. Ventola said that children typically learn their first word at 12 months and are making two-word combinations at 24 months.
When Dana’s son was 18 months old, he wasn’t pronouncing words properly and wasn’t putting two words together. As a professional who deals with autistic children every day at the Pagels Elementary School in West Haven, Dana feared the worst. She experienced for herself all of the feelings that she knew parents go through when their child is struggling with a disorder like autism.
“A lot of parents are embarrassed,” Dana said. “It’s a natural feeling.”
Dana remembered the fear she felt when she compared her quiet son to other kids on the playground, who were “talking circles” around him.
McBride (at left in photo) said that parents often worry that an autistic child will be seen as proof of poor parenting. She was quick to dispel this concern. “It’s not a problem of parenting,” she said.
Parents can also fear that their child will be “labeled.” Ventola stressed that an accurate diagnosis can help provide quick, targeted care for a child that is struggling.
These feelings are common for all parents. Dana, whose mother is from Chile, said that a sense of stigma surrounding disorders can be particularly common in Latino culture. “They take it as a black dot on their family,” Dana said.
When Dana (pictured) tried to teach her young son sign language to help him communicate, she was scolded by her Chilean mother. “He’s not retarded!” she told Dana.
N’Zinga Shani, the show’s host, wanted to make sure that the message of her program was delivered to any Spanish-speakers in the home audience. At one point, she urged Dana to explain, in Spanish, what a parent should do to find help if a child displays symptoms of autism. Looking into the camera, Dana said that parents should call 211, an information line that connects parents to social services in their area.
One of these services is the state-sponsored Birth to Three program, which provides house-call testing and care for children up to age 3. It was this free program that determined that Dana’s son didn’t have autism. His speech delay was due to an articulation delay, not a language delay. That is, he had a speech impediment. Now 4 years old, Dana’s son is in speech therapy and doing fine.
“It was a humbling experience,” Dana said. “It made me understand what it really feels like to be a parent on the other end.”
After the program, McBride said that there are many social service programs available to parents of children with autism. Parents can simply call 211 to get more information.
“It’s all free,” she emphasized.
(“21st Century Conversations” is a production of OneWorld Progressive Institute, Inc., a 5012©3 community organization that produces health literacy, education and civic engagement TV programs for the benefit of the broader community.)