Why testing matters
Any treatment for autism spectrum disorder (ASD) will make a claim about how it will help your child. It might claim to improve your child’s symptoms, teach skills or even ‘cure’ ASD. Testing the intervention involves checking what it claims to do against what happens in reality, when real people use the intervention. This process is also called ‘evaluating’ the intervention.
Essentially, testing matters because – conducted properly – it can tell you whether the intervention does what it’s supposed to do.
Scientific tests: the basics
Whether it’s a new skin cream, new computer software or interventions for ASD, most people agree that the best way to test something is to use a scientific approach. Science provides the best tools we have to conduct a fair test of whether something works.
Science tests interventions by:
- clearly describing the behaviours or symptoms that the treatment is supposed to change
- clearly explaining how the treatment is implemented
- clearly identifying how change in behaviour or symptoms will be measured
- controlling other possible causes of change in the behaviour or symptom (for example, changing only one thing at a time, having a 'control' or 'comparison' group, or testing in a way that can’t be influenced by opinions or beliefs)
- repeating the test to see whether the same results are found (preferably by other researchers).
Done well, this means a fair test has been done and that the test results are reliable.
Certain things don’t count as a test:
- personal testimonies, even those from other parents
- the word of an ‘authority figure’ – professionals can give conflicting advice about a treatment
- the collective opinion of a particular group of professionals.
Research and publication: the basics
Once researchers do a study to test an intervention, they might write a paper about the study and its results and submit the paper for publication in a journal. Any worthwhile journal will ‘peer review’ as part of its publication process. This means that the paper is sent off to other researchers who are given no information about who or where the study has come from. The researchers look at the study’s data, methodology, results and conclusions. If they approve the study based on these, the paper can be published.
There are two important points to note here. In the scientific community, not much weight is given to tests results that have not been:
Also, a single study rarely gets much attention. But if a number of studies point to the same results, those results begin to gain acceptance. Still, things change in science. Over time, new studies might challenge the accepted beliefs about an intervention. This is a good thing – the research process is about constant questioning, so that existing therapies can be improved or better ones can be developed.
Sometimes researchers publish a ‘systematic review’ about an intervention. This means that they look at all studies done on the intervention, carefully pulling them together and comparing the results to find and publish some overall conclusions about the intervention. Systematic reviews offer the most reliable conclusions you’ll find about an intervention.
Many ASD interventions are untested
Properly testing interventions isn’t always as easy as it sounds. This is why there is a lot of confusion about what does and doesn’t work.
Also, not all people working in autism research take a scientific approach to their work. This is one reason why fad therapies come about and claims about 'cures' are made and gain attention.
Example: the leaky gut theory of autism
It has been observed that a proportion of children with autism seem to have gut problems like food allergies or a ‘leaky gut’ (where chemicals leak from the gut into the nervous system). This observation has led to various ideas or theories about some gut problems being unique to autism – even ‘causing’ autism. In turn, this has led to untested or poorly tested interventions based on changing the child’s diet.
In an example like this, more testing is needed to find out whether:
- ‘leaky gut’ or food allergies are unique to autism (or a major cause of autism)
- treatment that involves changes to diet improves any or all symptoms of autism.