Evidence-based versus non evidence-based
It’s a painful reality that, just at a time when families need a clear and well-signposted path to follow, they are met with confusing and often contradictory messages on how best to help and support their child.
Whilst almost everyone agrees that early intervention is the most important thing to get started after an early diagnosis of ASD, that’s where the agreement seems to end.
You will find all sorts of people claiming all sorts of things. And, in amongst the mix, there are hefty doses of snake oil and downright dangerous ‘treatments.’
It’s just not fair!
Google ‘autism cure’ and you will find plenty of articles to read.
Try to find a child who is actually ‘cured’ and you will be struggling.
Look for a family whose lives have improved dramatically once given meaningful support, and you will find many.
Look for a school student doing well at school, not needing any support, and you can also find many.
Look for a family whose child or children are affected profoundly and who live a happy life, you will find plenty.
Our children don’t need to be cured, they need to be loved and supported!
But to get back on topic….
Evidence-based means that there has been some research to prove cause and effect. Whilst many treatments claim to have evidence to prove they work, in many cases, there actually has not been robust, top level research done.
Top level research means trials which are randomised, double-blind and placebo-controlled. These sorts of trials are very hard to do, expensive and take a long time.
Research into treatments of all sorts is being done right now, but the results can be painfully slow.
The Good News Stories and the Bad News Stories
You will hear lots of good news stories both from parents and from alternative practitioners. Stories are very compelling, persuasive, powerful.
But you need to realise that parents and alternative practitioners tend NOT to mention the bad news stories:
- The kids with low bone density and even broken bones because their milk-free diet never included enough calcium
- The child who has never been the same after undergoing round of chelation therapy
Because there are few medical treatments that assist children with autism, a huge alternative area has flourished.
When effective treatments both educational (early intervention) and medical are more widely available, then these non-effective treatments will be less appealing. They’ll be edged out by treatments that are truly individualised for your child.
Until then, do try to keep a level head. If a treatment seems too good to be true, it probably is.
How to be a savvy consumer
Depending on where you live, you may find yourself with a bewildering range of professionals willing to take your son or daughter on as a client.
Whilst rural and remote Australians will find their options very limited, it is still worthwhile to learn as much as you can to make sure that the services you can access are delivering the help your child need and deserves.
Here are some tips which we hope will make you an empowered and confident consumer of services:
- Read widely, understand your many options for early intervention and for other therapies and services. Our website has a great deal of information, as does the Therapies and Interventions section of the Raising Children Network website
- Don’t rush…. Take the time to look around, visit services and professionals and ask them many questions. You need to get a feel for the people and service as well as knowing the facts about them.
- Talk to other families who are currently with the service. They won’t give you numbers of unhappy customers, but you should be able to find out useful information.
- Take word of mouth with a pinch of salt. We all love a personal recommendation, however, there are many zealots in the world of autism who will paint a very rosy picture of whatever therapy they are implementing. Some professionals might also set themselves up as gurus and have extravagant claims to match.
- If something sounds too good to be true… it probably is… Sad but true. Everyone would love quick turnarounds, and these do happen. But it’s rare. Better to prepare yourself for lots of hard work ahead and then see quicker gains as a huge bonus, not the expectation.
- Beware of fad therapies. These are things that promise a lot but are not grounded in credible scientific evidence. Not only can these interventions be a waste of time and money, some can actually be dangerous.
- On a related note, avoid anyone claiming to offer cures for autism. Your child’s symptoms may need to be treated, but your child is not an illness who needs to be cured.
- Look at the costs. Many early intervention services can cost a great deal. This is generally because of the number of hours of therapy that are done. If the hourly rate of a single professional seems excessive then that’s a very strong warning sign. Paediatricians, psychologists, speech therapists and occupational therapists are generally your greatest expense. Other charging similar amounts might be taking advantage.
- Finally, seek providers who are respectful, thorough, and transparent. A few questions to ask yourself: Does this professional take my input seriously and answer my questions thoroughly? Do they presume competence with my child? Do they openly discuss how goals will be set and how progress will be measured? Beware of anyone is evasive, dismissive of your concerns, or who doesn’t treat you and your child as active participants in developing and refining a program.