A version of this article first appeared on iancommunity.org.
You have a child with autism to raise, school programs to consider, and a behavior plan to follow. Why should you care about autism research?
Simply put, the goal of research is to learn more about autism spectrum disorder (ASD), and that may mean better treatments and school programs down the road. It also may provide a much better understanding of ASD.
Just 50 or 60 years ago, doctors believed that autism was the by-product of poor parenting by so-called “refrigerator mothers.” Thanks to research, doctors now know that autism is not caused by cold, unfeeling mothers. It is a condition that can be treated with certain therapies.
Fortunately, today’s parents don’t have to experience the blaming and shaming inflicted on previous generations. But still much remains unknown about autism and its origins. Doctors still cannot say what causes it in most cases. Genetic changes have been found in some people with autism, but not in many others. Some researchers believe that the environment and genetics both play a role. But what environmental (outside) factors, and which genes?
Researchers are investigating these questions and many others. In separate studies, scientists are looking at immune changes in the brains of people with ASD, the effectiveness of certain drugs, treatment of sleep problems, exposures to pollutants and chemicals, and genetic changes. Researchers also are comparing therapies for children with ASD to see which work best. The results possibly could be used by doctors to prescribe better treatments and by teachers to set up more effective school programs.
THE SEARCH FOR EVIDENCE
Some parents wonder why it takes so long to find answers to autism’s many questions. It helps to understand the long road traveled by researchers.
Research seeks to eliminate biases. We all have opinions, but the role of science is to look for evidence. Scientists start with a question to be researched, called a hypothesis. They read what other researchers have already discovered about that question. They ask if the hypothesis makes sense, given what is already known about biology, genetics or psychology, for instance.
They must select the kind of study they want to use from among the different methods at their disposal. A case study involves detailed observations about one person or case. A “correlational study” uses statistics to see how different factors relate to each other. A “longitudinal study” follows a group of people, or cohort, over time to see how they develop. In “experimental studies” and “clinical trials,” researchers change one aspect of the environment to test its effect on other factors.
Researchers may choose to conduct an experiment when they want to test a new treatment or therapy. So how do they design it so it’s fair and valid?
One common way is to divide participants into two groups. One group, the “treatment group,” will get the new therapy being tested. The second group will receive either no treatment or an established treatment; this is called the “control” group. Scientists will know the new therapy is effective if the treatment group makes more progress than the control group.
But selecting people for the treatment and control groups must be done fairly, too. Say a researcher wants to see if a new speech therapy technique is more effective than existing therapies for autism. It would be unfair to put only children with mild autism in the new treatment group and only children with severe autism in the control group. At the end of the study, the researcher could say that the treatment group scored better on tests than the control group, but that may be because the treatment group had fewer speech problems at the start. The new therapy would look better than it really was.
One way to be fair is to assign people to the groups randomly and/or to make sure that both the treatment and control groups have similar make-ups. For example, each group might have the same proportion of boys to girls, the same percentage of children with mild, moderate and severe autism, and so on.
Researchers hoping to make a scientific breakthrough also can be affected by their own expectations. For example, they might be more likely to notice an improvement if they know someone was taking the real medicine and discount an improvement if they know someone was taking a dummy pill. That is why many medical studies, for example, don’t allow the subjects or the researchers to know who is getting the real pill and who is getting the phony one.
A thorough description of the experiment’s procedures, methods and results usually will be submitted to a professional journal, where, ideally, experts can determine if the research is scientifically valid. That process is called peer review, and it is used by the most influential journals to weed out research that may be unfair or invalid. The research paper will be published if the peer reviewers believe the study is acceptable.
RESEARCH AND REPEAT
Other researchers may want to repeat the experiment to see if they get the same results, often using larger groups of people. Say a study shows that a new autism therapy reduced behavioral problems for 7 of the 10 children who participated. Will the therapy produce the same results for 70 percent of all children with autism? It’s possible that there was something about the design of that study, or about the 10 children who were picked for it, that made the treatment look better than it really is.
So researchers may want to test the treatment on 50, 100 or 300 children to see how it works, while also using control groups to see what happens if you don’t use the new treatment. These are called “replication studies.”
As you can see, research takes time. Studies need to be designed fairly, participants found, research conducted, and data recorded and analyzed. The results should be published and the study repeated.
Your child is young, and you want answers now. Can’t scientists skip a few steps in the process, to speed things up?
In some cases, when research has been rushed, sloppy, biased, or inadequately reviewed, new medicines and medical devices have come onto the market that turned out to be ineffective or dangerous. Some products have been recalled, as a result. Sloppy research could lead to effective therapies being abandoned too soon or ineffective ones looking better than they really are. Even if a particular therapy carries no health risks, it may be costly and take time away from treatments that would work better for your child.