News and Notes about Scientific Research on Autism and other Developmental and Behavioral Disorders

Why Scientific Research?


A growing chorus from around the world is calling for more scientific research on autism and other developmental disorders, and for more science-based guidelines for the treatment of these disorders. Why? Hasn’t a lot of research been done already? Aren’t there a number of effective treatment “options?” Scientific research is slow, and tedious, and difficult; aren’t there lots of other ways to determine if a treatment helps people with autism and related disorders?

Unfortunately, although a good deal of research on autism has been published in the 50+ years since the disorder was first identified, in general the research has tended to be fragmented, and much of it has not been very rigorous. This probably stems from a number of factors: the sheer complexity of developmental disorders; a dearth of standardized, reliable diagnostic methods; a host of theories about causes, none of which have yet been confirmed definitively; and a lack of widely accepted, science-based standards for the treatment of autism and related disorders. Further, research on these disorders historically has not been funded at the same level as research on other childhood disorders, including several that are actually less common than autism. Only recently have the National Institutes of Health been able to increase funding for autism research substantially. Much of that funding has gone into basic research on possible causes and characteristics of autism and related disorders – for example, the research being conducted by the Collaborative Programs of Excellence in Autism, which were funded by four of the National Institutes of Health a couple of years ago. Relatively little federal funding has been available for scientific research on treatments for autism, either behavioral or biological.

In short, there is a pressing need for more focused, well-coordinated scientific research into causes of, and treatments for, autism and other developmental disorders. More federal funding may be available in the near future to address that need. In the meantime, scores of individuals and organizations are promoting a wide variety of treatments, ranging from drugs, hormones, special diets, and brain surgery to play therapy, sensory stimulation, and swimming with dolphins. Many promoters claim to have research showing that their treatment is effective. Others maintain that research – or at least, scientific research – is not necessary, because intuitions, personal reports, and clinical impressions provide sufficient “proof” that the therapy works. Many treatments and therapies sound wonderful, and many of the people promoting them have impressive-sounding credentials or compelling personal stories. How are concerned families, service providers, and policymakers to know what kind of information they should rely on to guide their decision-making about interventions?

The fact is that personal impressions and everyday observations, as interesting and convincing as they often seem, are not reliable sources of information about treatment effects, for one simple reason: We humans tend to see what we want to see; we accept information that fits what we already believe, and reject information that does not match our beliefs. In other words, if we have any reason to believe or hope that an intervention is going to benefit a child with autism, we will tend to report that the child improved after receiving the intervention, whether or not there was any actual change. Experimental psychologists sometimes refer to this as the “confirmation bias” or “expectancy effect.” No one is immune from it, including scientists. But good scientists who are aware of this natural bias take steps to minimize the likelihood that it will contaminate their studies. They don’t rely solely on their own observations or impressions, for example, but use instruments or other observers to measure treatment effects in objective ways, and ask others to check their findings.

Good scientists also understand that almost anything that is observed under everyday conditions could have a number of explanations. For instance, even if objectively measured improvements are seen in a child with autism after she receives a particular treatment, those improvements could well be due to any number of other things that were happening to the child at about the same time. Sound scientific studies employ specific procedures (“controls”) that allow other plausible explanations for observed changes to be ruled out with reasonable confidence. Scientists further guard against the confirmation bias by submitting their methods and results to critical review by other scientists, and by repeating experiments – their own and others – to make sure that the initial findings were not a fluke, or due to chance or some uncontrolled factor.

For these reasons and more, the time-tested methods of science – objective and direct measurement of effects, controlled studies, repeated demonstrations, independent verification, and peer review -- are much more likely to produce reliable information than other methods, such as surveys, caregiver reports, and uncontrolled case studies. They are not failsafe, but when they are used properly, scientific methods remove much of the ambiguity inherent in opinions, speculations, and beliefs from the process of evaluating treatment effects. Over the years, many treatments that seemed to be beneficial for people with developmental disorders, based on personal accounts and clinical impressions, instead proved to be ineffective or to have harmful side effects when they were examined objectively. Sadly, pursuit of such interventions continues to divert valuable emotional and financial resources from scientifically validated treatment, and from scientifically sound research on autism and other developmental disorders.

In summary, both history and common sense suggest that it is wise for parents and professionals alike to invest their precious resources in interventions that can be reasonably calculated to produce lasting, meaningful benefits for people with autism and related disorders -- that is, interventions that stand up to scientific testing. The New England Center strives to provide those kinds of interventions, and will emphasize scientific research in the NECC Research News.

-- Gina Green

For additional information…

Barrett, S., & Jarvis, W. (Eds.) (1993). The health robbers: A close look at quackery in America. Buffalo: Prometheus Books.

Green, G. (1996). Evaluating claims about treatments for autism. In C. Maurice (Ed.), G. Green, & S.C. Luce (Co-eds.), Behavioral intervention for young children with autism: A manual for parents and professionals (pp. 15-28). Austin, TX: PRO-ED.

Randi, J. (1982). Flim-flam! New York: Prometheus Books.

Sagan, C. (1995). The demon-haunted world: Science as a candle in the dark. New York: Random House.

Shermer, M.(1997). Why people believe weird things: Pseudoscience, superstition, and other confusions of our time. New York: W. H. Freeman.

Singer, M.T., & Lalich, J. (1996). “Crazy” therapies. San Francisco: Jossey-Bass Publishers.

Taubes, G. (1993). Bad science: The short life and weird times of cold fusion. New York: Random House.

Vyse, S. (1997). Believing in magic: The psychology of superstition. New York: Oxford University Press.

www.skeptic.com – Web site for Skeptic magazine and the Skeptics Society

Research at The New England Center for Children

New England Center research and clinical staff, along with investigators from the E.K. Shriver Center for Mental Retardation, are currently conducting research at NECC on a number of topics, including:

• Assessing the choices and preferences of individuals with severe language and learning difficulties

• Analyzing and treating severe challenging behavior

• Teaching discrimination and matching skills

• Assessing and treating feeding problems in children with autism and other pervasive developmental disorders

• Early intensive behavioral intervention for autism and pervasive developmental disorder – not otherwise specified (PDD-NOS)

• Symbol-based communication

• Nonverbal assessment of cognition in autism

• Increasing independence and engagement: Photo activity schedules, self-management training, prompting and prompt fading.

Scientific Research Info on the Web

For information about applied behavior analysis in the treatment for autism visit www.behavior.org.

For science-based information on biomedical treatments and theories in autism visit www.autism-biomed.org.

For professionally screened information on health care (including some treatments for autism and other developmental disabilities), visit www.quackwatch.com.



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