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Autism: The Research that Didn't Add Up

When Psychology Professor Meredy Goldberg Edelson followed the data trail, she found a dead end. Her figures didn't add up, but it wasn't just a discrepancy between her findings and others'. Her research into autism showed something was missing -- the research itself.

One of the commonly accepted tenets of autism literature is that the majority of children with autism are mentally retarded. But when Edelson's own research showed otherwise, she began an exhaustive study of more than 60 years of autism literature. She discovered that most of the data on which researchers have based their claims is highly questionable, and in some cases there is no research whatsoever.

Her findings are especially significant because autism is assuming epidemic proportions, with the number of children diagnosed increasing more than 20 percent each year according to the U.S. Department of Health.

"When I started doing intelligence assessments on children with autism, I realized early on that you can't use regular measures of intelligence," Edelson says. "Typical intelligence tests require children to have good verbal skills, among other things, but since autism impairs a child's ability to communicate with and relate to others, children with autism may not perform well."

Edelson's own research, using more appropriate measurements, showed that only 19 percent of the children in her sample were mentally retarded, as opposed to the 75 to 90 percent cited in psychology literature. "I began to suspect that maybe what we thought we knew about the intelligence of children with autism wasn't accurate," she says.

Researching the Research
Edelson decided to dive into the literature -- to literally research the research. She reviewed 215 articles dating from 1937 to 2003 that made 223 claims or obtained data about the rates of mental retardation in autism. What Edelson found stopped her in her tracks. Most claims did not derive from data and could not be traced to data historically. Of those claims linked to empirical studies, most did not use appropriate measures for testing intelligence in children with autism.

"The autism field has accepted as fact that children with autism are retarded," she says. "There are so many claims and they're so widespread that no one has bothered to look at the data behind them." According to Edelson, there is not a lot of data to support the claims, and the data that is available is 35 to 40 years old and is based on measures that don't even measure intelligence. The conclusions, based on faulty data or no data at all, impact thousands of children and families.

Because retardation in children with autism has been so widely accepted, Edelson says schools and parents have lowered expectations of these children. "If we believe that that vast majority of these children are retarded, we're not going to challenge them. We're not going to give them opportunities."

Challenging Ungrounded Assumptions
Edelson's research was published this summer in the autism journal, Focus on Autism and Other Developmental Disabilities. "We were very interested in publishing Meredy's manuscript because her research challenges a commonly accepted but rarely validated assumption regarding individuals with autism," says Juane Heflin, associate professor at Georgia State University and co-editor of Focus. "Meredy was thorough in her approach to the empirical question and provides strong substantiation to challenge the commonly held belief."

Aware of the potential for controversy, the journal solicited two highly respected individuals in the field and asked them to respond. "We anticipated strong reservations and were very surprised that both individuals commended Meredy for raising the question and for her careful approach to analyzing the data," Heflin says.

The rejoinders were published in the same issue as Edelson's article, and they not only commend her work, but also speak to its potential impact. One states, "Hopefully, her request for more extensive and objective research in this area will come to pass."

Edelson is unfazed by the political wrangling. She just wants the truth to come out so children with autism can be helped. "I'm not saying that children with autism are or are not retarded," she explains. "I'm just saying the literature doesn't scientifically support the claims. In the 1950s, children with autism were institutionalized. Today we know that they have more options, from education and treatment to life plans including college and careers, marriage and children. If most children with autism aren't retarded, we need to find ways for them to interact with society and help them become all they can."