Family searches for autism answers

Laura Jacoby knew something was different about her young son, but no one would listen to her.

“Originally, we had taken him to the doctor because we had a lot of problems with him wandering off, and he’d been thrown out of preschool,” Jacoby said. “When we’d talk to him ... it’s like he didn’t understand. He didn’t know what we were doing.”

Her son Jackson, now age 7, wasn’t like other kids. He had developmental and speech delays, and he seemed to be off in his own world. Jacoby turned to doctors.

“The first psychologist we went to basically looked at him, watched him play for 15 minutes and said, ‘Oh, he has ADHD. Come back when he’s in first grade, and we’ll give him medicine,’” she said.

Jacoby said she knew that diagnosis didn’t quite fit, and she began to do research of her own.

“I was looking something up on the Internet, and I started reading through a bunch of signs, and I thought, ‘You know, as much as I don’t want this to be a problem, a lot of these are a lot more familiar than I want them to be,’” she said.

She was looking at signs of autism.

Now, partially due to rising autism rates, doctors are working to improve and narrow its definition.

The current manual in use for diagnosing autism is the Diagnostic and Statistical Manual of Mental Disorders IV, and the upcoming fifth edition will contain a new definition and parameters for autism.

As the definition stands in DSM IV, autism is roughly divided into three groups based on severity. The new definition would not be divided as such and would focus more on sensory processing problems.

In the past several decades, autism rates have risen drastically. In 1930, the rate was essentially zero. Now, autism occurs in one of every 100 children, according to a National Survey of Children’s Health study.

Mark Blaxill is a leading expert and advocate for autism awareness in the United States and co-author of the book “The Age of Autism: Mercury, Medicine, and a Man-Made Epidemic.”

“After 1990, the rate of autism exploded, and many times. Ten-fold, a hundred-fold,” Blaxill said. “We were at zero less than a century ago.”

According to an article published in Science Based Medicine, much controversy has occurred about whether vaccines are linked to autism.

However, some researchers believe the rise might be because of autism’s broadening definition, rather than autism being caused by the environment.

Blaxill said he believes the evidence points to an environmental cause — more specifically, mercury exposure.

“If you wanted to design a drug to cause autism, mercury would do that effectively, and we’ve seen that in animal models,” he said.

He said mercury can come from anything from certain immunizations in pregnant women or children to mercury present in the environment as a result of the Industrial Revolution and coal burning.

One of Blaxill’s daughters has autism, and he said her diagnosis drove him to delve into the world of these disorders.

“When my daughter was diagnosed in 1988 ... I did everything I could to get to the front of the line, and there were long lines for the appointments, to see every expert and specialist I could find,” Blaxill said.

But he encountered a problem, he said.

“Very quickly, I had meetings with some of the world experts, and it was pretty apparent pretty quickly that the only thing they were interested with me was money,” Blaxill said. “They had really nothing to offer except for the ability to place a label on your child.”

Jacoby experienced similar frustrations. Everyone kept trying to reassure her nothing was amiss, she said.

“Our pediatrician ... he was looking for major signs, and it was a little more subtle than that, than a 15-minute visit when you see the doctor,” she said. “You’ve got one side pushing and saying you want to get him help as soon as possible, and you’ve got the other side pushing saying, ‘Oh, he’ll grow out of it,’ and you feel caught in the middle.”

Both Jacoby and Blaxill said it was hard to know where to turn after the diagnosis was reached.

“We didn’t know really who to go to or who to ask,” Jacoby said.

One Bloomington-based organization, the Indiana Resource Center for Autism, is trying to bridge this information gap.

“It has a mission to do research as well as training, as well as disseminating information to folks,” center representative Marci Wheeler said.

She said that, with the upswing in cases of autism, the center has become busier.

“We get many more inquiries, phone calls, emails, people visiting, asking for information, saying they feel their child may have this, so they want to look into diagnosing,” she said.

She also said the increase might have been caused by better diagnosing methods.

“The people were out there, and many of them were getting seen, but they might have been with a different label,” she said.

However, those labels could be changing again. The movement to possibly limit and change criteria for autism is leaving some parents afraid their children might be cut out from the help and benefits available for their disorder, Wheeler said.

“Are people going to be misdiagnosed because there won’t be a category that they fit?” Wheeler asked.

She said she didn’t have an answer.

Blaxill said that with autism, it’s a struggle between the “crazy parents” and the scientists, who decide matters such as labels.

“The medical community is defensive in ways that are just beyond comprehension,” Blaxill said. “It’s the crazy parents against the white-coated experts who have science on their side, and that’s a bold-faced lie.”

Jacoby said she had to fight physicians at times and try different routes to get answers for her son. Then, once she had answers, she said she felt as if she was already behind on treatment.

“By the time you know there’s something wrong, you feel that you’re behind because they’re like, ‘You have to do all this stuff as soon as you can,’” she said. “And as soon as you get someone to listen to what you’re saying ... you already feel guilt because you’re already behind.”

She stressed that concerned parents need to keep pushing and trust their
instincts.

“If you really think there’s something wrong, and you’re not getting the answers you want, try and find a different way to get those answers,” Jacoby said.

She also said her son is doing better than he was, now that he has been diagnosed and is being treated accordingly.

“It takes longer, and it takes a lot of work, and it doesn’t always go at the pace you want,” Jacoby said. “It does get better.”