Research and Resources

Introduction
The wide-ranging complexity of autism makes understanding autism and autism research so difficult and compelling.  Subsequently, components of autism research extend to many areas that have traditionally remained separate.  Only in recent years has autism research become an exercise in collaboration within the scientific and medical communities.  Given current knowledge, autism is a diagnosis with more questions than answers.  Understanding these questions is paramount to understanding research.  Below are three of the most revealing questions:

Why is autism research so “complex”?
Autism is considered a spectrum disorder, i.e. associated behaviors, communication difficulties, and developmental disorders can occur on a scale from mild to severe.  Each case is different and will undoubtedly change as one ages and is exposed to ever-changing biological, environmental and instructional influences.  In addition, the classical psychological diagnosis of autism is a description of associated symptoms, which—though quite useful—may hide the fact that several different causes could have an outwardly similar manifestation of symptoms.  Autism is also unique in that the related research also exists on spectrum, from “basic” (medical and biological) science to “applied” (behavioral, communication, educational, etc.) science and everything in between.

What causes autism?
No one is sure, yet.  Researchers are working to understand the etiology of autism, but so far nothing has been consistent across all cases.  Human physiology is a long chain of intricate events, starting with genetic code and ending in outward appearances and personalities.  Along the way, molecules are combined and taken apart, cells are built, protein synthesized, hormones regulated, neural function promoted, and on down the line.  We know that genetics play a role; unfortunately no genes have been explicitly implicated.  It is also known that exposure to certain environmental toxins such as thalidomide is associated with a later diagnosis of autism.  We cannot rule out the possibility that other toxins may again cause similar symptoms.

Is there treatment or cure?
There are several treatments or interventions available although there is currently no substantiated cure(s).  It is now widely acknowledged that the provision of early intensive behavioral intervention (EIBI) can result in such significant improvement in some individuals that they are able to “lose” their autism diagnosis following intervention.  (This finding however is not consistent across all individuals and, therefore, research continues.)  Just as autism occurs on spectrum, autism treatments (and the research to identify, verify, and refine them) run a gamut of possibilities:  Does one pick just one symptom to treat?  Furthermore, how does one go about treating unique cases with the same method or similarly, establish benchmarks for assessment when the disorder is so complex?  Even identifying which symptoms are easiest or most important to treat is cause for more research.  As more is learned, new questions develop.  With a moving target like autism, the questions grow rapidly and the need for quality research to find the answers becomes even more imperative.

A cautionary note
As a word of caution, it is important to note that autism and the autism community are no strangers to purported “miracle” cures and fads.  Especially today in the “Information Age,” it is even more important to investigate the scientific and medical bases and research underlying any treatment.  Fortunately, quality research is not beyond reach.  It received an added boost in the public’s eye with the recent, rapid advances of medical science into the understanding of the genome and human physiology.  As complex as studying autism is, solid research is being conducted across the U.S., and every result is put to good use influencing the direction of future research.  Finally, research spending on autism has increased dramatically in the past 10 years and continues to increase as non-profit and government sources focus more attention on the disorder.

This resource has three sections and a comprehensive directory of what OAR refers to as the “Research Community.”  First is a description of federally sponsored/mandated research under the auspices of the National Institutes of Health.  Next is a resource on autism projects at the Centers for Disease Control and Prevention.  Last, we cover various other public and private research centers across the U.S.  The directory that follows identifies where and what kinds of autism research are in progress across the U.S.

Disclaimer
This section of OAR’s online information program is intended as a resource to provide the user with a greater understanding of autism-related research currently in progress through federal and local programs.  The information contained herein has been drawn from multiple sources and is presented “as is.”  It is accurate to the best of our ability.  We have identified sources wherever we have quoted extensively and have provided a comprehensive listing of related sites.  Whenever possible, you will find links as well.

OAR considers this section an orientation at best.  It is not intended to serve as a basis for treatment decisions.  If you have suggestions to make it clearer, better, and more complete, we welcome your feedback.