On a typical Saturday afternoon, Paolo Puno sits at the dining room table poring over his iPad.
The Richmond eightyear-old is concentrating deeply on his computer game, a puzzle that involves using straight lines to slice up complex shapes into equal pieces. Paolo strokes the touch screen with his fingers.
When the puzzle proves to be too challenging, Paolo goes online and watches video clips posted by other gamers. He studies the videos closely, observing the techniques needed to advance to higher levels of the game.
Beside him, Paolo's mother Cristina glances over and smiles at her son.
"He likes to watch other people play so he knows how to do it himself," she explains.
Like her son, Cristina has relied on the Internet to help her through challenging situations. When Paolo was three, he was diagnosed with autism and Cristina went online to learn more. She was not alone. Almost 70 per cent of Canadians who use the Internet at home searched for health and medical information in 2009, according to the most recent Canadian Internet Use Survey, published by Statistics Canada. That's an increase of more than 10 per cent since 2005, when roughly 58 per cent of Internet users went online to search for this type of information.
However, even after digging through pages of information posted online, families are often left with more questions than answers.
With so many misleading messages and conflicting perspectives about autism, making informed treatment decisions for children can seem like an impossible task. Further, new University of B.C. research suggests that such websites are one-sided and confusing. The researchers are taking a closer look at these sites and have found that one-quarter of the cited scientific research doesn't support the claims they are linked to.
What to do? Where to begin? In addition to all of this, parents must deal with a new, daunting diagnosis.
SHOCKING NEWS
For Cristina Puno, learning that her son Paolo was autistic was a shock.
She and her husband had suspected their son was delayed; Paolo wasn't speaking at age two. And the Punos had been on a waiting list for five months to meet with doctors at Sunny Hill Health Centre for Children, which specializes in treating children with complex learning and behavioural issues.
Still, the doctor's words were a blow for Cristina.
"It felt overwhelming, like something big fell on my chest," she recalled. "I couldn't believe that this was happening."
An autism diagnosis can be daunting for parents, especially since there are so many uncertainties surrounding the disorder, which affects as many as one in 150 Canadian children.
We still don't know exactly how autism develops. Some studies have identified a collection of genes believed to be related to autism. Other studies point to environmental factors. Recent research suggests that older parents are more likely to have an autistic child.
Whether it's genetics, environmental influences, or both, parents struggle with guilt, blaming themselves for directly or indirectly causing the disorder.
Because each case is unique, it's difficult to predict how these young children will respond to intervention and what their adult lives will look like.
In Paolo's case, the doctor sat down with the Punos and presented the facts. There is no known cure for autism. Paolo will have autism for the rest of his life. At the end of the meeting, Cristina and her husband were handed a folder containing pamphlets on the disorder. Although Cristina found the information helpful, she remembers being overwhelmed. It was up to her and her husband to figure out what to do next.
In B.C., families with an autistic child under the age of six can receive up to $22,000 annually from the Ministry of Children and Family Development.
When the child turns six, families can claim up to $6,000 per year. In addition, the school district receives $16,000 to cover the cost of the child's special education, according to the ministry's current fact sheet about autism.
This financial support is meant to help families cover the cost of treatment, including behavioural, occupational and speech therapy. The family needs to decide on the specific treatment approaches to employ.
These decisions, however, are complicated by the disorder's complex nature. Autism is a spectrum disorder and encompasses a diverse set of symptoms, so children with autism don't necessarily experience the same set of challenges.
One high-functioning autistic child could have relatively minor issues with speech and making eye contact, for example, while a severely autistic child might not have any language skills and may exhibit repetitive behaviours such as rocking and arm flapping.
Because of this, there is no standard, one-size-fits-all, approach to treating the disorder. Some families choose conventional approaches, using therapies with clinical studies and data to back up their effectiveness. One common conventional approach is behavioural intervention, where therapists coach children on social interaction.
Still, there are several different types of behavioural therapy. Some programs involve parents during therapy sessions, while others might work one-on-one with the child.
Behavioural therapy isn't the only approach. Some parents opt to put their children on restrictive diets, which some believe reduce behavioural traits of autism. Other parents use games and special playgroups to encourage their children to engage socially.
Like many parents faced with a plethora of treatment options, Cristina Puno sought clarity through parent support groups, friends and her pediatrician.
She also went online.
CONFUSION ONLINE
Many parents use the Internet to make important health decisions. There are many good reasons to do so. Questions arise after they leave the doctor's office. The information in pamphlets is too basic. Parents are curious about what other families are going through. Ultimately, they want to be prepared.
As a professional Web developer with a master's degree in information management, Cristina is comfortable navigating the web. She found there was a lot of information online. However, it wasn't always easy to understand, and there was a large volume of literature to get through.
Nina Di Pietro, a University of B.C. researcher in neuroethics, says it's easy for concerned parents to be swept up in the abundant information online.
"There are thousands, if not millions of websites that are selling all sorts of things and providing information," she said. "There is a lot of information that parents access online that is not necessarily correct."
Di Pietro recently led a study analyzing the content on popular websites run by groups advocating for the awareness of childhood brain disorders, including autism. The results of her work were published in February's issue of the peerreviewed journal Neuroethics.
The researchers focused on sites with the highest number of page hits and examined the types of autism interventions discussed on these web pages, and the tone of these messages. They found that close to 70 different treatment options for autism were mentioned on
three of the websites they analyzed. The therapies ranged from gluten-free diets to behavioural interventions. All of the options were described as promising and effective.
This is a big concern, said Di Pietro. Not all of these treatments are as effective and safe as they appear online.
"Because messages about these different treatments are overwhelmingly encouraging, this could lead to confusion in terms of which treatments to try and which ones not to try," she said. "These websites weren't doing a very good job at helping these parents make treatment decisions."
Di Pietro is continuing her investigation of the websites. She's looking at whether the messages containing references to scientific papers are accurate, in terms of whether they link to relevant studies.
"Quite often [websites] will cite scientific papers to make an argument seem credible," Di Pietro said. "People are going to read this and think it's a true statement. Maybe it's not."
Her preliminary findings are alarming. Di Pietro retrieved and read through a selection of the scientific papers mentioned on the popular websites. She found that almost 25 per cent of the references found on these websites didn't support the claims they were linked to.
"A lot of the treatment information on these websites was unsubstantiated," she said. "A quarter of the citations were incorrect, meaning that they didn't back up the claim that was being made at all."
Also, she noticed that many popular websites didn't provide parents with a broad picture of their treatment options. There are a few debated theories concerning autism, and some websites might present only one side. For example, some of the websites that Di Pietro looked at promoted the use of chelation therapy, a controversial treatment where heavy metals that are believed to cause autism are removed from the body.
The authors sourced a handful of older scientific studies that supported the effectiveness of this treatment option, but did not mention other cases where children died during the course of this therapy.
Additionally, Di Pietro said that based on recent science publications, there is no evidence that establishes that chelation is an effective treatment for autism. She also noted that on some of these websites it was not clear who had written the content. It's not obvious whether the authors had evidence to back up their statements, and whether their claims could be generalized and were applicable to most autistic children.
"It leads to many questions about how this information is being evaluated," Di Pietro said. "Who wrote this? Are they an expert. . A lot of this is not very transparent."
CRITICAL CONSUMERS
Deborah Pugh, executive director of the Burnaby-based group Autism Community Training, or ACT, agrees that misinformation circulating online is a major problem.
"I think one of my greatest concerns is organizations that published research [online] but it hasn't been published and reviewed by their peers," she said. "So then you get into a situation where there is the appearance of research."
The ACT group works with an advisory council that includes physicians and scientists specializing in autism. The group doesn't endorse a specific type of intervention, but provides presentations and information concerning a range of options and offers general advice on how to select a service provider.
One of Pugh's goals is to turn parents into critical consumers.
"Families are often amazed and horrified to learn that [some of] the service providers that they initially come into contact with are not ethical," she said. "Their assumption is that when they have a diagnosis of autism they will be surrounded by wellmeaning people that will work very hard for them. That's not always the case."
Pugh has heard stories where families were promised their child would be cured. Ultimately, their bank accounts were drained and their hopes dashed.
Whether they acquire information from online resources or from other parents, it's essential that they get their facts straight before spending time and money on new therapies.
Dr. Lonnie Zwaigenbaum, a pediatrician at Edmonton's Glenrose Rehabilitation Hospital, agrees.
Zwaigenbaum, who is also a researcher at the University of Alberta specializing in autism and early development, suggested that families pursue conventional approaches, such as behavioural and speech interventions that have been well studied. However, he doesn't disregard the potential advantages of additional alternative therapies that are inexpensive and safe.
"We shouldn't paint all complementary and alternative approaches with the same brush," he said. "Even though we don't have the hard evidence that it's effective, I don't think that we should have a knee-jerk reaction that [parents] shouldn't be considering them all."
Zwaigenbaum has heard of parents who have used music therapy or taken their autistic children horseback riding as a way of engaging them in social activities. To Zwaigenbaum, these types of therapies might not have scientific evidence to back up their efficacy, but some autistic children might benefit and have fun.
However, he has worked with many families who wanted to seek out therapies that can be very costly or potentially dangerous - and sometimes both. Zwaigenbaum worries about these families.
Dr. Stephen Wellington, a pediatrician at Vancouver's Sunny Hill Health Centre for Children, said this is an issue he continually faces. Parents often speak to him about pursuing unconventional approaches.
"People are looking for miracles here. People want to keep hope that this strategy is going to be the answer," Wellington said.
ABOUT THE AUTHOR
Rebecca Cheung is an intern with The Vancouver Sun, NeuroDevNet - a national research network dealing with children's brain disorders - and the National Core for Neuroethics at the University of B.C. This internship is partly funded by MITACS.
This project also serves as Cheung's master's thesis at the University of B.C.'s Graduate School of Journalism.
Her academic program was funded by the CIHR Health Research Communications Award.
"The problem still remains that these alternative interventions, at the end of the day, lack scientific evidence and rigorous proof that show the intervention is actually helpful or actually targets the behaviour that it reports to help."
Several safe alternative strategies might not be effective and might carry some hefty costs.
Many parents find themselves conflicted between taking the time to research the credibility, safety and costs associated with therapies for autism and starting their children on an intervention program right away.
Parents can relax, said Wellington. Manyconcerns about early intervention are exaggerated.
Wellington said it's very rare to find an autistic child who hasn't had any form of intervention. Even if a child isn't officially diagnosed with autism, most parents recognize their child's challenges and enrol him or her in play groups or speech therapy.
"[I tell most parents] 'Guess what? You already have started,'" he said. "You've actually been doing a bunch of really good things for a couple of years now. This sense of urgency to start right away is a little bit artificial."
Also, Wellington said parents shouldn't feel overwhelmed about selecting an intervention for their child. The best treatment really depends on family dynamics. What's most important is finding a therapy that feels right for them.
"Choosing a behavioural intervention program is kind of like buying blue jeans. There are all sorts of different sizes, colours, and dimensions," he said. "They all have some basic common components . The main thing is getting a pair of pants that fit you comfortably."
THE ROAD AHEAD
Twice a week, eight-yearold Paolo Puno meets with his behavioural interventionist. He works with his speech therapist once a week. Because of these programs, Cristina has seen her son grow and improve, year by year. These days, Paolo is outgoing and talkative.
Although Cristina found a treatment regimen that works for Paolo, there are many challenges ahead.
Costs quickly add up. Many behavioural consultants in B.C. charge $85 to $160 per hour, while speech language pathologists charge about $100 per hour, according to the profiles listed on the Registry of Autism Service Providers.
It's also becoming increasingly difficult for families to find support outside the home. Cristina stopped getting notes about her son's progress during the last school year, which she believes is because educational assistants are stretched too thin. And Paolo's weekly school playgroup was discontinued.
In the meantime, Cristina has reached out to her local parents' network, the Richmond Autism Parents Support group. She attends meetings and moderates the group's website and forum so parents can connect and offer advice. Cristina is also exploring different after-school programs and alternative therapies for Paolo.
Although there are many opinions and ideas about autism circulating on and offline, above all else, Cristina believes in her son.
"He has a lot of potential. His teachers see that he knows a lot of things, but he can't apply it," Cristina said. "I can see that he can do more."
Illustration:
- Rebecca Cheung, Special To The Vancouver Sun / Richmond's Paolo Puno and his mother, Cristina, use technology to help him with his autism.
