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An author with Asperger's syndrome who struggled with poor self-esteem even as he succeeded in creative and business endeavors gave Utah parents and advocates some sobering advice Wednesday about how not to treat children with autism.
Asked by a child psychologist what words he longed to hear as a child, John Elder Robison was blunt: "I would have wanted to hear I could be something besides a worthless piece of (expletive deleted)."
Robison was given a standing ovation after a keynote address for more than 300 clinicians, teachers, parents and advocates of people with autism in Utah and surrounding states.
They attended a daylong pre-conference that preceded the International Meeting for Autism Research, which gets underway Thursday at the Grand America Hotel in Salt Lake City. More than 1,800 of the world's top autism researchers are sharing the results of their latest research.
Robison, author of such books as "Look Me in the Eye" and "Be Different," also told parents and advocates to fight back against discrimination and stereotyping of autistic people, to expose their autistic charges to rich and diverse experiences, and to work with scientists to better the lives of those with autism.
Robinson predicted that a push for greater acceptance of those whose brains process the world differently — something he called "neurodiversity" — will be the next civil-rights movement. He now works at the College of William & Mary, which has a thriving neurodiversity initiative, he said.
A second keynote speaker, Thorkil Sonne, said the company he founded, Specialisterne, expects to land jobs for 100,000 autistic Americans and 1 million people worldwide within 10 years.
A native of Denmark, Sonne was a successful businessman when his third son was diagnosed with autism. The company he founded — it's Danish for "specialists" — assesses and employs high-functioning autistic adults to test software.
"We need to change the mindset of hiring managers," Sonne said.
William McMahon, chairman of the University of Utah department of psychiatry, led the committee that organized the conference for the International Society for Autism Research. There's more research all the time into autism, he said.
"It's just really exciting, because it means there's a lot of focus on what is clearly a major challenge for public health, education, employment and housing."
It has become a tradition at the society's meetings to have workshops for locals the day before the scientists dig in "to accelerate progress in the host community," McMahon said.
Also Wednesday, seven researchers from universities and medical schools from New York to California — including Brigham Young University — spoke at a news conference, giving a glimpse of the research they will report at the conference beginning Thursday.
Their research ranges from the genetic causes of autism to the differences between girls with autism and girls without and boys with autism and boys without. Brain imaging and outcomes for adults who were diagnosed as children also will be discussed.
BYU psychology professor Mikle South told how he and his students are trying to better understand anxiety in people with autism. Roughly half the autistic people suffer from anxiety, he said.
To see how the brains of autistic people respond to fear, South and his students did two projects that involved putting people with autism and people without it in functional MRI machines.
Nick Top, then an undergraduate, had the idea and organized the project, with the help of graduate student Kevin Stephenson, South said.
In the first test, those in the MRI machines were shown blue or yellow squares on a monitor while the MRI watched the blood flow in their brains. The blue squares, however, were intermittently followed by a burst of air at the subjects' throats. The amygdala — the fear recognition center of the brain — soon lit up for those without autism every time they saw the blue square.
But not for those with autism, South said.
"They are not showing a difference between threat and safe cues," he said. "They don't know what to be afraid of."
Instead, the brains of those with autism did not begin reacting to the blue squares until the air puffs stopped altogether.
"Now their brains look threatened," South added, "even though it's safe."
It could be that their brains are slower to sort out the threat, or that people with autism are afraid all the time and so react differently.
In the second study, BYU researchers tried to tease out why those with autism were more fearful when the threat was removed.
They looked at what happened in the white matter of the brain — what South calls the "information superhighway of the brain." They found that those with autism had less connection between their brains' frontal lobes and the amygdala.
"Our frontal lobes can evaluate information and tell the amygdala to calm down," he said. "That's less connected in autism."
The research offers big implications for treatment, South said.
If people with autism do not have the emotional awareness to challenge their thoughts, as others with anxiety learn, they need to be taught to be "body detectives." That way, when a person with autism notices he is sweating or that his heart is racing, he will recognize those as signs he is becoming upset. From there, South said, he can be taught relaxation techniques.
"It's teaching more explicit rules than waiting for them to figure it out on their own."
Twitter: @KristenMoulton