By the time Karen Simmons’s last child came along, she knew a thing or two about babies. Jonathan was her sixth. So when he was a toddler and started doing things like spin in circles or flap his hands in the air, the Edmonton mom didn’t think much of it. But her sister-in-law kept saying that she thought something wasn’t quite right with the little boy. When Jonathan, who’s now 18, started peeling wallpaper off the walls and avoiding eye contact, Simmons began to wonder if her in-law might be right. Eventually, the family learned Jonathan was autistic.
“I was traumatized,” Simmons tells the Georgia Straight in a phone interview. “I thought my life was over. I thought, ”˜No way. There is no way he has autism.’ All you hear is, ”˜There’s no cure. It’s a lifelong diagnosis. There’s nothing you can do about it.’ Well, that was around 1990. We’ve come a long way.”
She’s not exaggerating. Jonathan—who had “early intervention” treatment, which involved occupational and speech therapists, among other health professionals—loves computers, goes to college, and has his driver’s licence.
That’s not to say the family’s journey has been easy.
“We were all on a huge learning curve,” says Simmons, who also has a child with attention deficit disorder. “People need to understand, not to jump to conclusions when parents can’t handle their child, to think, ”˜Maybe there is something else going on.’ People are very judgmental. We’ve all heard comments like, ”˜Why can’t you manage your child? What’s wrong with you?’ ”
Autism is a neurological-spectrum disorder, meaning that there’s a wide variation in how the condition presents itself. According to the Autism Society of B.C., some people with autism have below-average intelligence while others have average or above-average. All have trouble interacting appropriately in social situations. Four out of five people affected are male.
Simmons’s experience with autism instilled in her the determination to help others, people like her who, at the outset, had no idea what they were in for. She started out by writing a book, Little Rainman: Autism—Through the Eyes of a Child (Future Horizons), in 1996. Then she founded Autism Today, a grassroots organization that now has about 60,000 members worldwide.
Autism Today is hosting its biennial conference in Vancouver from February 26 to March 1. Open to the public, the conference will cover various therapies, including applied behavioural analysis, biomedical intervention, the SCERTS model (social communication, emotional regulation, and transactional support), and the Miller method, among others, as well as nutritional and holistic approaches to the disorder.
“People have choices,” Simmons says. “There is so much that can be done.”
The conference’s theme is “autism through the lifespan”. Government funding for people with autism usually stops between the ages of 18 and 22, Simmons says, emphasizing that this is a big obstacle for many families to overcome.
One of the conference presenters, William Shaw, will be sharing new research into treatment. The director of the Kansas-based Great Plains Laboratory for Health, Nutrition, and Metabolism tells the Straight that the use of cholesterol seems to hold promise in managing autism.
“A large percentage of children on the autism spectrum have low cholesterol,” says Shaw, a biochemist, in a phone interview. “Everything thinks, ”˜Oh, low cholesterol: that’s great.’ Well, it’s not great.”¦Very high cholesterol is bad, and very low cholesterol is also very bad.”
He says that he’s used cholesterol supplementation in people with autism and that certain behaviours, such as self-mutilation or aggression, ceased “almost immediately”. “When we stopped the supplementation, the aggressive behaviour returned.”
He cautions that more research is needed, noting that Johns Hopkins University plans to look at cholesterol’s role in treatment.
“This could open up a whole new avenue of treatment,” Shaw says. “And because it’s a supplement, not drugs, people can try it out on their own if they’re comfortable before waiting for the results of the formal studies, which will take years and years.”
Shaw, whose 19-year-old stepdaughter has a severe form of the disorder known as Rett’s syndrome, will also discuss genetic variations common in people with autism.
Vancouver resident Sarah McGowan attended the last Autism Today conference in Vancouver in 2007. The mother of four, whose youngest child has autism, says the more information that parents have, the better. Her son wasn’t diagnosed until he was four, even though he hadn’t yet started to talk and had long been physically harming his parents and sleeping only four hours a day.
Now eight, McGowan’s son is doing well, thanks to several strategies, including verbal applied-behavioural analysis and nutrition.
“We started a gluten-free diet, and he just blossomed,” McGowan says in a phone interview. “He started having eye contact; he started having friendships with other kids. If he has gluten, there’s a big regression.”
McGowan, who has three older kids, urges other parents not to get discouraged.
“You can’t just read all the doom and gloom,” she says. “If you do that, you’ll feel defeated, overwhelmed, and then you’ll be no help to yourself or your children and your family. Do some reading, then take a break after 30 minutes. Put on a song or a movie or read a book. Replenish yourself.
“Even through the misery, hardness of him not talking, not sleeping, the aggression and the harm, we just naturally loved him through all this,” she says, “and we knew we were going to figure it out one way or another.”