(My daughter is very unimpressed by this title! She loves unicorns!)
This blog underlies the fundamental principles of my blog and hence my tag line “I take no prisoners!” As an administrator of Dyslexia Support Australia and on twitter I have been viciously hounded for my stance on “alternative therapies”, including appalling private messages and personal abuse. I believe that parents deserve to be given all the evidence, or lack there of, about a potential therapy before making an informed decision. I’ve been frequently called closed minded. But there is no point in being so opened minded that your brains fall out!
Dyslexia attracts more than it’s fair share of magic cures! Some are downright ludicrous and so far from our understanding of Dyslexia that it is incredible that anyone would fall for their slick marketing campaigns. Music to reboot brain waves, camel milk, funny electrodes that you stick on your head, coloured prisms, wiggly lines on computers, balancing on one foot, mental imagery, orientation points and many more! When marketed with enthusiasm, plenty of cash, wondrous anecdotes, and science terminology sprinkled in for good measure, they dazzle parents desperate for a quick solution to their child’s struggles.
Unfortunately the current education system in Australia does not address dyslexia adequately opening the door to a range of Dyslexia “treatments”. Parents are desperate and feel powerless, thus making the lure of well marketed alternative therapies irresistible. Evidence based remediation for reading difficulties can be a long and arduous road making “shiny cures” that promise instant or quick fixes tantalising. Due to a significant lack of understanding of Dyslexia, alternative therapies are often recommended by teachers, doctors, speech pathologists and psychologists who fail to assess the evidence for these practices…..I have heard many parent stories in our support group of “alternative therapy” recommendations from professionals.
But how do we know if the therapy is not a groundbreaking new treatment that is just being ignored by mainstream science. How do we seperate the snake oil cures from the exciting potential new intervention?
As Barry Beyerstein pointed out “Though most solitary visionaries ultimately turn out to be cranks, every so often one proves to be the pioneer in a new and important branch of science. It is well to remember, though, that the heroes of these rare success stories brought the initially doubting fields around by force of evidence, not mere conjecture and special pleading. It is up to the claimant to support his or her own case and the scientific community is generally well-served by its institutional scepticism.” Beyerstein, B (1995).
Peddlers of treatments and interventions aimed at children with learning difficulties have a moral obligation to support their wild claims with strong empirical evidence. The more exaggerated the claim the greater the need for valid research. There are far too many products on the market that have been around for decades, fly in the face of what we understand about Dyslexia and have been “invented” by someone whose background is not remotely connected to any discipline with expertise in Dyslexia. Even when they believe in the validity of their treatment the onus is on them to prove it works before they possibly negatively affect the lives of so many families. The responsibility does not fall upon the scientific community to unmask the flaws in your product!
“Consumers should expect providers to go to the market with already-tested, replicated, and high-level evidence before they ask people to sign-up to an expensive intervention. We don’t expect cancer patients to organise their own randomised controlled trials of new treatments, so why should it be left to schools (who don’t typically have the appropriate expertise on staff) to stumble around and try to work out whether an education intervention is an appropriate investment above and beyond what they are already doing (or could be doing)?” Professor Pamela Snow (2015)
The failure of such interventions on struggling children wastes not only limited financial resources but can also have a significant psychological impact on children already vulnerable to self esteem issues, anxiety, depression and learned helplessness. The promise of a solution for a struggling learner is tantalising but failure of the touted solution when promises were grand can have a serious impact. Delay in appropriate remediation can be catastrophic as research shows early intervention is paramount.
“While the use of a nonvalidated approach may not pose an imminent threat to the safety of individuals, it could deprive people of exposure to effective interventions, waste valuable time, and provide false hopes that may lead to feelings of discouragement after the approach fails to produce the desired outcome.” Hyatt, Keith J.; Stephenson, Jennifer; Carter, Mark (2009).
Despite scientific evidence to the contrary or the complete absence of research many therapies rely on glowing testimonials and anecdotes. Unfortunately when parents have mortgaged their house and put all eggs in one basket they seemed compelled to convince others of the virtue of this miracle treatment. Not only do they want to believe in the treatment, they need to believe in the treatment. Reliance on testimonials and anecdotes by a treatment intervention flies in the face of scientific theory. Psychological effects of treatments such as the placebo or Hawthorne effect, particularly with struggling children suffering from low self esteem, can produce significant temporary outcomes which need to be accounted for by scientific investigation.
Testimonials and anecdotes are unreliable as they are subject to selective positive memories, bias and self deception. Even in scientific research early investigations can be falsely positive due to unintential bias and enthusiasm by a researcher keen on a new treatment and new research tends to be a small sample size.
The fact remains there are evidence based interventions for dyslexia that have a proven track record of efficacy. Systematic and explicit phonics has held up to frequent scrutiny. Metaanalysis research in 2014 of a range of intervention studies found that “The results revealed that phonics instruction is not only the most frequently investigated treatment approach, but also the only approach whose efficacy on reading and spelling performance in children and adolescents with reading disabilities is statistically confirmed. “Katharina Galuschka, Elena Ise, Kathrin Krick, Gerd Schulte (2014)
To delay effective evidence based treatment in exchange for alternative therapies can have a huge cost. Parents, educators and health care professionals have a responsibility to children in their care to demand valid research evidence for dyslexia interventions. It is time education applied the same standards of evidence as the medical community. Without evidence we are floating children in a world of fairytales and broken promises.
The reality is I could not sleep at night if I thought the lovely parent anecdotes in our support group were the only information parents recieved when making life altering decisions for their child. As heartwarming as a child’s belief in unicorns and pink bunnies is, it is more satisfying to think all kids could read fantasy stories too!