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Understanding Research: An Autism Researcher Answers Your Questions
Marina Sarris
Date Revised: October 30, 2024
Consumers are bombarded with information about research and autism interventions, therapies, and programs. Often these videos, social media posts, and articles include terms that can mean many different things. J. Kiely Law, M.D., MPH, director of research operations for the SPARK autism study, answers some common questions about what research is – and isn’t. Law is a doctor, an autism researcher, and the mother of an adult with autism. She co-founded an online autism research project, the Interactive Autism Network, before joining SPARK.
Q: The terms “evidence-based medicine and treatment” or “science-based medicine” are used a lot. What do they mean?
A: It means that an idea or treatment has been scientifically tested and, based on those test results, the idea is valid. In the case of a treatment, it means that the treatment works. The more times the test is repeated with the same result, the more evidence there is that the idea or treatment is valid. For example, cars go through a series of tests to make sure they are safe, and medical science does the same thing. Science uses a specific way of testing an idea, called a hypothesis. This way of testing is called the scientific method, and its purpose is to remove anything from the test that could bias the results or make the results incorrect.
Q: Sometimes businesses publish testimonials from people about how a therapy or product works for autism. Is that similar to research?
A: No. Individual testimonials, especially when presented in the context of marketing a product, should be viewed with a lot of skepticism. Generally, these products have not been tested using the strictness of the scientific method.
Q: Can testimonials – the personal experiences of autistic people and parents – ever become part of research? How would that happen?
A: Yes, definitely! People who have a condition have the best information about the day-to-day experience of living with that condition. When many people report similar experiences or problems, then it sends a powerful message to the research community. This is why projects like SPARK collect data about autism directly from autistic adults and families of children with autism. With this information, researchers can create valid studies of the issues reported to them by research participants.
Q: Research is supposed to be objective and unbiased, but what does that mean? How do I know if something really is objective?
A: In the context of science, it means that when an idea or treatment is tested, the researcher tries to remove all outside influences. Then the results are based only on the factors being tested. There are many types of bias that can affect the results of a study. Although we are not always aware of it, our own experiences and feelings can influence how we judge outcomes. This is one of the reasons why drug treatment studies are often set up so that neither the researcher nor the patient knows who is receiving the active treatment versus a placebo, or sugar pill. This kind of study is called a double-blind experiment because both the researchers and the participants don’t know who is getting the treatment being studied.
In studies that rely on people answering surveys, researchers have to design the questions so that they don’t lead the person to answer in a certain way. For example, if a question asks a person how much they “liked” a treatment, that’s a leading question that assumes they liked it. It’s better to ask participants if their impression of the treatment was negative, neutral, or positive. That removes the bias that the treatment should be liked.
There are lots of different types of bias. Let’s say you’re doing a study on the stress levels of parents raising a child with autism. All the parents in your study are well-resourced – they have access to a lot of therapy, treatment, and support for their child. The results show that the parents have relatively little stress. Those results are biased by that fact that the parents studied happen to have many resources that reduce family stress. That’s called selection bias because the people selected for the study do not represent all types of parents of a child with autism.
It’s probably impossible to remove all forms of bias from a study so it’s important to know what the biases are and to report in your findings how these biases may have affected the results. For example, in studies that involve families with only one child with autism, researchers often report that the results may not apply to families who have several children with autism. That’s because it’s possible that autism may be different in families that have many members with autism.
Q: What does peer review mean, and why is it important?
A: Peer review is when other researchers and experts evaluate and critique the scientific integrity or merit of a new research idea being proposed, or study results being published. If a researcher has a new idea and wants to present it for funding, other experts look at it to see if has merit, to start with.
Also, after a study has been finished, other researchers review it before it is published. They evaluate the techniques used in the study and the interpretation of the results. They see whether the researcher has read what has already been published on the topic. They decide whether the study should be published in that journal.
Peer review is a way to make sure that the potential biases of an individual researcher are removed as much as possible from their interpretation of the results. It is supposed to help address outside influences that could affect the researcher, such as who will benefit from the outcome of a study. What if a researcher owns stock in a company that is producing a drug that they are studying? Peer review tries to ensure that those conflicts of interest are addressed.
Q: Can you name some examples of how research has changed what we know and how we think about autism?
A: Research has really changed the way we approach autism. Here’s one example that began with information from families. Parents have known that wandering and running away were a huge problem in autism, although a lot of them didn’t receive any guidance from their pediatricians about it. If they met other parents of kids with autism, they would ask, ‘Is your kid a runner?’ However, there wasn’t any evidence to know what the impact was, or to know how many kids were affected. Researchers examined wandering and published their results in 2012.1 That research found that nearly half of children with autism wandered or ran away, and more than half of those children went missing. Now that we know how common wandering is, we can make people aware of it and come up with solutions to help keep children safe.
More recently, studies involving autistic adults have found that they have more physical and mental health problems than the general population.
SPARK has learned more about the genetic basis of autism from its participants. So far, more than 150,000 people with autism, their parents, and siblings have contributed saliva to SPARK for DNA sequencing. Thanks to them, we have learned that significant variations in more than 400 genes or parts of chromosomes contribute to autism. We also know that people with those genetic variations are more likely to have certain conditions, such as a small head size, cognitive impairment, or motor delays, than people who don’t.2
Interested in joining SPARK? Here’s what you should know.
Photo credit: Karen Ige by Bootstrap Agency for SPARK