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“We called it the pregnant pause,” Iland recalled. “I told his doctor, ‘He used to say all these words. Why is he now only saying eight?’”
Iland, a Saugus resident, was instructed not to worry, that Tom would grow out of it in a few months. Eventually he did.
Yet there were other increasingly troubling signs — lack of interest in others, trouble playing and socializing and a general aloofness.
“Tom was fascinated by things he wanted to do. He would watch videos over and over, memorizing the entire script and acting it out later,” Iland said. “We called him a party of one.”
When he was 5, Tom was screened for autism at the suggestion of Iland’s sister, Barbara Doyle, an educator and autism specialist.
In 1989, however, it was thought those with autism also had to have corresponding cognitive disabilities, which Tom didn’t display — he was already reading at age 3.
At 13, Tom was finally officially diagnosed with autism, defined by Merriam-Webster as “a variable developmental disorder that appears by age 3 and is characterized by impairment of the ability to form normal social relationships, by impairment of the ability to communicate with others, and by stereotyped behavior patterns.”
With the diagnosis came a new resolve for Iland, then a full-time wife and mother.
“When it was recognized that autism and Asperger’s syndrome affected those with a normal to high intelligence level, it shifted the idea of who could have it,” she said. “I knew I needed to do something about it, that these kids needed special education focused on speech, language, and social skills.”
She started locally, advocating for her son and then for other Santa Clarita Valley families that had a child with autism to make sure they were aware of the resources available through their school districts and the state. At times it was a tough road.
“Some people told me that nothing was wrong with Tom, that I should be happy he was doing as well as he was. Some people truly understood and were supportive of me,” Iland said. “I did what I could for Tom, and he improved tremendously with the help he received. Yet, I realized that if other kids continued to judge him as odd, what kind of chance would he have to make friends and belong?”
With this in mind, Iland helped start the “Yes I Can!” program a decade ago, partnering with the William S. Hart District and the city of Santa Clarita to promote understanding and acceptance of people with autism by pairing general education children with their counterparts on the spectrum.
Focusing on his strengths was another way that others could appreciate Tom and his gifts. He didn’t play soccer, but Iland realized Tim’s incredible gift of memorization and attention to detail could work on the field in another way.
“Since he memorized all the rules and called plays by the book, Tom became well-known as the fair referee,” Iland recalled. “It was a way he could contribute, by using his area of strength. It showed the community that people with autism have a lot to offer and give, that they contribute to the richness of society.”
Today, Iland is a nationally-recognized expert, advocate and award-winning author on autism. She co-wrote “Autism Spectrum Disorders from A to Z,” with Doyle in 2004. Iland, who had once studied Spanish at the University of Madrid, translated and published the Spanish version of the book in June, 2005 as “Los Trastornos del Espectro de Autismo de la A a la Z.”
She was inspired to do so by a chance encounter following an autism conference.
“There was a man frantically looking for a book on autism in Spanish. When he couldn’t find one, he burst into tears and asked, “How can my wife help our child? She doesn’t speak or read English,’” Iland said.
The book was honored with the International Latino Book Award for Health that same year and in 2007, both books received the Exceptional Parent Magazine “Symbol of Excellence Award.”
Iland received her Master’s Degree in Special Education with distinction from California State University, Northridge in 2007. Her thesis was titled “Obstacles Faced by Latino Mothers of Children with Autism,” inspired by the fact that only one in two Latino children with autism in the United States are served by their school systems.
“That was just like me 20 years ago,” she said. “The Latino community is about 20 years behind in securing both diagnoses and services for children with autism.”
Iland regularly speaks to standing-room only crowds across the United States. An appearance in Texas attracted 400 guests to a 150-person capacity venue, while her Jan. 26 engagement at the American Association of University Women at the Valencia Residence Inn drew its largest audience ever. She has also spoken in Mexico and Puerto Rico and appeared numerous times on Univision and Telemundo.
She is a founding member of Community and Law Enforcement Aware Response, a collaborative to reduce criminal involvement of people with disabilities and inform law enforcement officials on how to respond to people with special needs. Iland is currently coordinating autism awareness training for up to 9,000 Los Angeles Police Department officers.
“It’s estimated that one in 91 people have autism. It’s more common than cancer, Down Syndrome, or any childhood onset illness. I see a shift in how people with autism are perceived, but there’s still a lot of pain in families, there’s still so much work left to do,” Iland said.
Locally, Iland helped establish the Santa Clarita Special Needs Registry, a safety tool for local families, and is a partner in Project Lifesaver. She is also working as a consultant with the Center for Disease Control and National Institutes of Health on a model autism outreach program.
“One way we work to shift perception is to say someone is a person with autism, rather than an autistic. That’s people-first language, something that Tom has training on and asks people to use,” Iland said.
Now 26, Tom, who lives in Valencia, works in the accounting department of a major entertainment studio and has a girlfriend. His siblings Danny and Lisa are pursuing careers in Washington state and New York.
Lisa seems to be following in her mother’s footsteps — she is pursuing a master’s degree from the University of Washington in Seattle and hopes to work with teens and young adults in the area of social skills.
When she graduates, Lisa will be much more prepared than Iland initially was.
“I call this the un-chosen journey. I was picked to have Tom and the rest presented itself to me,” Iland said. “I never imagined the different ways I could help people.”
For more information on Emily Iland and her book “Autism Spectrum Disorders from A to Z,” visit www.asdatoz.com or call (661) 297-4205. For help and support with autism in the SCV, contact the Santa Clarita Autism Asperger Network (SCAAN) at 297-8381 or visit www.scaan.org.
