When Janet Wininger’s son Ian flicks or flaps his fingers, it’s his way of communicating he’s happy or excited.
“He has self-stimulating behaviors — he’s an extreme sensory seeker,” says Wininger, a youth services librarian at the Sacramento Public Library’s Sylvan Oaks branch in Citrus Heights, California, and parent of a 25-year-old with severe autism.
She says her son was diagnosed when he was about 1½ years old, but he showed signs of autism spectrum disorder even earlier than that.
“We were fortunate that he was in a day care center since the age of 4 months, and they had a student from the year before who had been diagnosed with autism,” Wininger says. “This was in 1995, and no one was identifying that diagnosis so early. The center notified us at 13 months that they would do the 18-months-old developmental assessment on Ian, and when he had three pages of things he wouldn’t or couldn’t do, we knew there was something going on. He was soon getting tests and being assessed by our local regional center, and the diagnosis came at 20 months.”
Ian is among more than 3.5 million Americans who have autism spectrum disorder. He’s also among the estimated one-third of people with autism who remain nonverbal. In observance of the month of April’s focus on autism, we dive into what it means to live with autism, common symptoms, how to interact with a person who has it, resources for parents and how to advocate for awareness.
Understand the condition
Autism spectrum disorder is a developmental disability that can cause significant social, communicative or behavioral challenges, according to the Centers for Disease Control and Prevention. ASD is about 4½ times more common among boys (one in 42) than among girls (one in 189), and autism is the fastest-growing developmental disability.
About one in 68 children has been identified with autism spectrum disorder, according the CDC, and it occurs in all racial, ethnic and socioeconomic groups.
“An individual with autism might not look any different versus those without ASD,” says Todd Harris, executive director of autism services at Devereux Advanced Behavioral Health in Downingtown, Pennsylvania. “However, the way an individual with autism thinks, feels and socializes could be vastly different. The key is that every individual with autism has different skills and strengths, along with diverse needs and challenges.”
According to Autism Speaks, common symptoms of ASD include social interaction difficulties, communication challenges and a tendency to engage in repetitive behaviors. But symptoms and their severity vary widely across these three core areas. Some common behaviors also include being seemingly unaware of surroundings; fixating on an object; rocking; humming; and having an inability to interpret gestures, facial expressions and social cues.
“Early signs of autism include lack of eye contact, delayed or absent language, not showing or sharing items of interest with caregivers, repetitive or unusual play — for example, spinning wheels of trucks rather than playing with them, prolonged examination of toys or lining up objects,” says Katherine Stavropoulos, an autism expert and a professor at the University of California at Riverside.
Wininger’s son Ian has low-functioning autism with behaviors but is nonverbal. He’s had a speech device or picture-communication system since he was four.
“He also has some vocal approximations that he can use with people who know him really well,” she says. “We believe … he has good receptive understanding but has the inability to vocalize what he’s thinking. And when he gets the sensory input that he craves, like going fast or spinning around or weighted blankets, he becomes much calmer and more focused.”
The condition is referred to as a spectrum because there is a wide range of intellectual and language abilities, experiences, strengths and functioning for those assigned this diagnosis, says Lauren Herlihy, a clinical psychologist at the Hospital for Special Care’s Autism Center in New Britain, Connecticut.
“What used to be labeled as autistic disorder, Asperger syndrome and pervasive developmental disorder are now included within the autism spectrum disorder diagnosis umbrella,” Herlihy says.
Awareness and education are the fundamental steps in creating an atmosphere of inclusivity for those with ASD, says Heather Creese, director of behavioral support at Greystone Programs in Hopewell Junction, New York, which advocates for people and families living with autism and other developmental disabilities.
“Knowing the various strengths and reinforcers for a person with autism can increase success and assist in building a positive rapport,” Creese says. “For some people, spacial boundaries are essential; sound sensitivity is something to take into consideration, and lighting — bright, flashing and/or pulsing lights — can be uncomfortable. Like many of us, we all appreciate when directions are clear, concise and direct, this is the same for those with ASD.”
Parents have access to an abundance of information about autism and related resources, including residential opportunities, day programs, after-school activities for school-age children, and vocational and work-readiness training opportunities in community-based settings. Ian is in a day program for adults, says his mom, Janet.
“He will hopefully be learning some job skills and even just finding out what he might want to do with his life,” Wininger says. “He is loving it. They know him from the former school program, and the continuity due to that is important and so nice for him.”
Ian lives in an apartment with a roommate who is older and has special needs and he comes home on the weekend. “He has 24/7 staffing for the apartment,” Wininger says. “It’s been a real leap of faith for us to have him away from home and overnight — we have to trust them but still monitor what is happening since Ian can’t tell us anything or advocate for himself.”
Creese says services often focus on developing essential living and social skills, building meaningful relationships and assisting with employment, as well as transitioning programs for young adults who have aged out of school and need assistance with post-graduate and residential placement. She says to advocate for awareness of autism and other developmental disorders, gain awareness yourself and get involved.
Harris recommends as starting points for parents and families “A Parent’s Guide to Evidence-Based Practice and Autism” from the National Autism Center.
“The greatest challenge is not in finding information but, rather, determining which information is valid and based upon scientific research,” Harris says. “The Autism Speaks website is another reliable option for families to find resources organized by geographic region. The Autism Society has organized information on its website that can be helpful, too.”
As her son’s biggest advocate, Winginger says she’s grateful for all the resources Ian has. She knows that although he has autism, it’s important for him to lead as normal of a life as he can.
“I try really hard not to micromanage anything having to do with the apartment, but I also make sure I’m always available to help or step in when necessary,” she says. “It’s important that he gets used to this type of routine — we are older parents and won’t be around forever, so at least he is getting used to living away from us at a time when we can still have input into his life and needs.”