To Jason Lu, autism isn’t a disease or condition, but a different way of thinking and communicating.
Or to put it another way, people with autism represent “a different species of human being.”
Lu, 51, a Carmel Valley resident, has a prime vantage point from which to make such observations: His two children, ages 5 and 6, have been diagnosed with “autism spectrum disorder,” which the U.S. Centers for Disease Control and Prevention defines as a group of several related conditions that “can cause significant social, communication and behavioral challenges.”
In addition, Lu, who holds a doctorate in theoretical physics from Stanford, believes he also is autistic, although he has never been officially diagnosed.
Lu has self-published a book, called “Eikona Bridge,” which details his successful efforts at working with his children to help them develop verbal and social skills. The book is available on Amazon.com, and Lu will give a talk about the book and his experiences on Dec. 6 at the Carmel Valley library.
According to Lu, people with autism are strongly focused on visual communication skills, and “that’s the way they should be developed.”
Pushing them to develop social and verbal skills before they are ready can actually hamper their progress, he said.
Lu conceded he is not an expert on autism, but merely a parent who wants to share his personal story.
“Professionally, I’m very busy with work,” said Lu, who holds a position as chief scientist with an information technology company. “This is not my job. Just a success story that I think other parents can benefit from.”
Dr. Suzanne Goh, a Harvard-trained pediatric neurologist who treats children with autism in San Diego, said books such as Lu’s can help families struggling to deal with the condition, as well as practitioners like herself.
“The experiences of individuals with autism and their families is incredibly important in helping us understand how to improve therapies,” Goh wrote in an email. “Because of such reports, we know the great diversity of sensory experiences that are a part of autism. Any effective treatment approach needs to take this into account.”
In the book, Lu details how he used drawings to communicate with his daughter and help her develop verbal and social skills. The girl is now in first grade and is “mainstreamed,” meaning she attends regular classes and fully participates in all classroom activities.
When it came to his son — who is on the more severe side of the autism spectrum — drawings did not capture his attention, and Lu said he struggled to find a way to relate to the boy. He hit upon using homemade videos, and that proved to be a breakthrough.
For example, he wanted to teach his son to call him “papa,” but was unsuccessful until he made a video about a dinosaur family.
“It all changed the day when I understood Ivan: Yes, Ivan was visual, but he was a video-memory person, not a picture-memory person!” Lu wrote in the book, in which he changed his children’s names to protect their privacy. “He learned to look at my drawings, learned to read and learned to call me Papa!”
Lu considers techniques such as the drawings and videos to be “bridges,” which aren’t needed after the autistic person has crossed over them. He said he no longer needs to draw pictures for his daughter, or make videos for his son. Instead, he can talk to both children, or use drawings to aid communication with his son.
The word “Eikona” in the book’s title comes from the Greek word for “image,” said Lu.
According to the CDC website, diagnosing autism can be difficult, because there is no medical procedure, such as a blood test, to confirm the condition. Instead, doctors rely on behavior and development to make a diagnosis.
The CDC said 1 in 68 children has been diagnosed as being on the autism spectrum, and the number of people being diagnosed is increasing, possibly because of a broader definition of the condition, and better efforts at diagnosis. However, an actual increase in the number of people developing the condition cannot be ruled out, according to the CDC.
A number of different approaches are used to treat autism, according to experts.
“Treatment for autism should include a comprehensive medical approach that looks at many different aspects of human biology — neurological, genetic, gastrointestinal, infectious, immune, endocrine, and others,” wrote Goh.
“There are many new therapies that are emerging, and one of the most promising areas is in mitochondrial medicine. (Mitochondria are the power plants of animal cells, which turn food into energy.) Medical therapies are aimed at improving the cellular and biochemical environment of the brain so that the mechanisms for learning can function at their best.
“At present there is a very wide range of outcomes for those with autism. The child’s unique biology is one important factor, and others are the therapies that are used (both medical and behavioral/educational) and how well they are implemented. For the vast majority of children tremendous progress is possible,” she wrote.
Some autistic people need a lot of help in their daily lives, and others need less, said the CDC. While a range of treatments is available, there is no cure.
But Lu said that in talking to adults with autism, he has concluded that most don’t think of it as a problem that needs to be fixed.
“They have different ways of looking at the world,” he said. “They don’t want to be cured; they don’t think of it as a disease.”
The central message he sought to convey in his book, said Lu, is that “The children are OK. The children are really OK.”