By Deborah Jeanne Sergeant
The prevalence of autism spectrum disorders is one in every 54 live births, according to the Centers for Disease Control.
If autism affects your life, you likely home in on stories about it. Or well-meaning friends tag you about new autism research.
Though widespread, autism remains little understood by the medical community. Because scientists have discovered little about what causes autism, it’s only natural for parents, grandparents, teachers and others interested in autism to seek answers from perhaps less-than-accurate sources.
Consider these tips for finding accurate information on autism.
1. Turn to well-known, reputable organizations.
“The CDC is a good place to start,” said Tracy Panzarella, director of clinical services with Autism Services, Inc. in Amherst. She is a licensed speech-language pathologist. “The Autism Society of America is also a great resource. They have some parenting resources as well. American Speech Language Hearing Association has information for both parents and professionals. They’re the accrediting body for speech language pathologists. They address the language piece of it. AOTA, American Occupational Therapy Association, is another good one. They have information for both parents and professionals.”
2. Don’t drop current interventions to try something yourself at home.
“Before you try anything, check with the pediatrician,” Panzarella said. Be wary of therapy that can harm the child physically or psychologically. Is it safe? Universally accepted? Will insurance cover it?”
3. Take a wary look at research from a less-than-well-known research organization. Sound research should have a large group of participant’s number in the several thousand over a long period of time. A small, short-term, local study can indicate skewed results. Anytime you hear phrases such as “cure your child’s autism” or any type of pigeonholing such as “every child with autism responds to this” consider those red flags.
“Each child is unique a snowflake and responds to things differently,” Panzarella said. “I watch out when I hear these big claims. Kids on the spectrum can amaze you, but that is one unique child’s experience. You can’t generalize.”
4. Take a wary look at a small, short-term, local study.
“Look at the sample size of the population,” said Lawana Jones, founder and executive director of The Autism Council of Rochester, certified autism specialist and parent of a child on the autism spectrum. “Is it a complete representation of the data? What are some of the different elements of the data, like the race and ethnicity of the subjects? Ages? Make sure it’s a broad range of ages and sample size. If they don’t have a good sample size, it should make you wonder.”
5. Anecdotes can sound very convincing because of the emotional element and personal information they contain, but they hold the least amount of weight. It’s not that parents of autistic children purposefully lie about their experience; however, many other factors may be involved which they have not considered. Or they may cite factors that have nothing to do with their child’s autism.
“Reach out to a professional,” Jones said. “Most parents whose children are newly diagnosed, it’s by a professional who’s familiar with the spectrum.
“Be careful of people who say they’re experts but have no credentials. Make sure they’re certified and check the source of the certification, not just people who know people on the spectrum or have a special education degree.”
6. Organizations selling information or products may be the least reliable sources. That doesn’t mean their ideas have no merit; however, their claims may be overinflated since they want to profit.
“That is not a site they want to use as a source,” Jones said.