The following excerpt from  Life Journey Through Autism: A Parent’s Guide To Research is provided with the kind permission of  The Organization for Autism Research.

HOW TO BE A SAVVY CONSUMER OF SOURCES OF AUTISM INFORMATION

One of your greatest challenges will be sifting through the vast array of information about autism. There are a multitude of autism resources, and it can be very difficult to distinguish between reputable and questionable sources of information. This section will provide you with guidance on where and how to search for resources on autism and autism research. The next section in this Guide is designed to help you learn how to evaluate what you find.

Finding the Research

You will undoubtedly hear about autism research studies through news reports on television or in newspapers and magazines. Television, newspapers, and magazines report scientific research “second hand,” in a brief way that is easily understandable to the general public. In their reports, journalists may cite the author and name of the professional journal in which the research is published, but many of the details of the research may be left out. For the most part, journalists do a good job reporting the research, but it is important to remember that there is no scientific process to make sure that what journalists report is accurate. Therefore, to be sure that the research is interpreted and reported accurately, it is best to get the report “first hand” from the person or persons who conducted the research.

Professional journals report research by the scientists who conduct the studies. The research reported in journals is usually submitted to a process called a “peer review.” During a peer review, other researchers read and comment on the quality of the research based on whether it adheres to the ethical and quality standards of the profession. There is a great deal of competition to publish, so the articles that appear in journals are the best of the research being done. This Guide will help you find these “first-hand” reports and determine their applicability to your child’s situation.

Websites

Many Websites cover the topic of autism. Unfortunately, not all Websites are good sources of information. Without some experience or training in searching the Internet, it can be very difficult to discriminate among these Websites. The Websites for the National Autism Organizations provided in the Roster of Autism Organizations on page 35 provide good information on selected topics. Many provide links to other good sites and scientific articles on autism. Some characteristics of Websites that provide avenues to autism research are:

• Provide links to other major autism organizations, academic research institutions, and professional research articles;
• Hosted by government agencies or other non-profit organizations; and
• Clearly cite sources of information.

Searchable Online Databases

Searchable online databases are very good sources of information about autism research. Some databases (such as PsychInfo compiled by the American Psychological Association) are for members only and only accessible to the general public through university libraries.

Increasingly, very good online databases are becoming available that can be searched from home-based computers. Three searchable databases available to the general public are: PubMed (Medical Publications), SCIRUS (for Scientific Information Only) and ERIC (Education Resources Information Center).

PubMed is maintained by the National Library of Medicine at the National Institutes of Health and contains an extensive collection of medical and psychological literature.

SCIRUS is maintained by Elsevier Science, the leading international publisher of scientific information, and is available to the general public on the Internet. This Website provides a searchable database of the professional literature and other sources of scientific information on the Internet in a user-friendly format.

ERIC is supported by the U.S. Department of Education, Office of Educational Research and Improvement, and the National Library of Medicine, and contains an extensive collection of literature in the field of education. It is an excellent source of school-based research.

Online databases are designed to retrieve research articles using the “keyword” system. This means that when a word is entered, the online database retrieves all articles that contain that word. The advantage of this system is that it is very easy-to-use. The disadvantage is that this system retrieves more information than the average person needs or can possibly review. For example, by entering the keyword “autism” into PubMed, the system retrieves more than 6,000 articles!

Therefore, the challenge to new users of online databases is learning to narrow a search so that only articles of interest are retrieved. This will usually require some “trial-and- error” type practice using these databases. Below are some tips for narrowing an online search using PubMed, SCIRUS, and ERIC.

Tips for Searching PubMed

• Enter keywords such as “autism” and “children” with the word “and” between the words to narrow a search; if too many references are retrieved, another keyword can be added to the search; if too few references are retrieved, a word can be deleted.
• Another way to narrow a search is to choose the “limits” option on the home page, which allows a search to be narrowed through publication date, author, population, field, and so forth.
• If an article is related to a topic of interest, click on the “similar articles” option, or try entering the author’s name in the author field of the “limits” option to retrieve similar articles. Authors typically publish more than one article on a topic.

Tips for Searching SCIRUS

• Using SCIRUS, you can enter keywords such as “autism” and “children” with the word “and” between words to narrow a search using the same method as PubMed described above.
• Another way to narrow a search using SCIRUS is to enter a phrase in quotation marks, such as “children with autism.” This will retrieve all articles containing the entire phrase.
• SCIRUS also has a “similar articles” option and provides a box of similar search term options on your results page to help you narrow your search.
• When you retrieve an article, you may have to click on the “abstract” link to retrieve the abstract. At the end of the abstract, SCIRUS provides a telephone number and email address for contacting the author of the study.

Tips for Searching ERIC

• Choose the “selected fields” option on the Search ERIC Database page to enter keywords; if too many references are retrieved, add another keyword; if too few references are retrieved, delete a word.
• Choose the “ERIC Thesaurus” option on the Search ERIC Database page, and then enter search terms in the “ERIC Wizard.” The “ERIC Wizard” converts search terms into similar indexed terms in the thesaurus.
• When an article of interest is located, choose “author” in the “selected fields” option, and enter the author’s name to find other articles written by that author.

Medical and University Libraries

Medical and university libraries contain a wealth of autism research. Those who are fortunate enough to live within commuting distance of one of these libraries can conduct online searches using databases that have been purchased for use by these libraries. These databases are usually more comprehensive than those accessible from home computers.

Medical and university libraries also own large collections of professional journals. The general public is usually welcome to browse these journals and make photocopies of articles to take home; be sure to check the rules at your local library.

The most recent issues of professional journals are usually kept in the reference section of the library. Past issues are generally housed together with book collections in the library. The reference librarian is your best source of help for locating these journals.

Article Location Services

For those who do not live within commuting distance of medical or university libraries, there are several good article location services that will either email, fax, or mail copies of articles to subscribers. It is important to note that there is a fee for these services. Prices of articles typically begin at around $12.00, and users must subscribe to these services to access articles.

Once you begin researching, you may discover that a particular researcher has published articles in an area of interest to you. Most autism researchers are very happy to provide reprints of their articles to interested parents. The best way to contact researchers is through email. When you locate the email address of a researcher, ask him or her to send reprints of their articles.

Some tips for finding contact information for researchers are:

• In articles published in recent years, contact information, including an email address, is provided on the bottom of the first page of an article, or at the end of the article, near the reference section.
• The abstract of an article is another source of author contact information. The abstract usually provides the author’s institution of affiliation, which will usually be a government agency, private company, or university. Authors from government agencies and private companies can often be contacted by email from the agency or company Website. The SCIRUS database described above provides authors’ email addresses with the abstract.
• Researchers at universities can often be located by conducting a “person” search on a university Website. Typing the name of the university using any search engine (such as yahoo.com, google.com, or msn.com) will take you to their Website.