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Autism Spectrum Disorders a Resource for ASD Information on the Web internet resources Corey Seeman Autism spectrum disorders A resource for ASD information on the Web utism Spectrum Disorders (ASD) is a organizations, and researchers. However, Acollective term given to developmental some of these sites have been developed and disabilities that impair the way that individu­ maintained by apparent “nonexperts.” These als interact and communicate with others. may be parents or family members of people ASD includes Autism, Asperger’s Syndrome, with autism. Though these accidental authors pervasive developmental disorder not oth­ may lack the traditional credentials sought erwise specified (PDD­NOS), and others by librarians, they have become the biggest as defined by the DSM­IV (Diagnostic and experts in the field by reading everything Statistical Manual of Mental Disorders). available on the subject. They have used Asperger’s Syndrome is sometimes used their intellectual curiosity and desire to help synonymously with high functioning autism others with ASD, practically garnering all the to distinguish people on the spectrum who credentials that they need. have a stronger command of language. Autism was fi rst identified in 1943 by The basics of ASD two physicians working on both sides of • Autism Fact Sheet from Child De­ the Atlantic; Leo Kanner of Johns Hopkins velopment Institute. A great resource University coined the phrase autism, while that includes a basic defi nition, common Hans Asperger worked in Austria. Origi­ signs, diagnosis and causes, role of genetics, nally thought to be rare (one case in 2,500 change over time, treatments, and links. Ac­ children), recent estimates put this number cess: http://www.childdevelopmentinfo.com closer to one in 500. This “epidemic” could /disorders/autism_fact_sheet.shtml. be caused by a number of factors, including •What is Autism? From Autism Society controversial ones (MMR vaccines, environ­ of America (ASA). An excellent overview of mental toxins, genetics, etc.) to more safe autism and related disorders, including infor­ ones (better diagnosis of ASD and recogniz­ mation on the prevalence of autism and links ing verbal children with autism). to discussions on common characteristics, Not surprisingly, the increase in the num­ causes, diagnosing, working with profes­ ber of cases of ASD has coincided with a great sionals, and a free online course on autism. deal of attention in the national media (with Access: http://asa.convio.net/site/PageServer cover stories in both Time and Newsweek), a ?pagename=whatisautism. week­long special report on NBC and related networks, and a publishing boom that has General Web sites seen the number of books published on ASD • Autism­INFO. Created in 1998 by Jenny nearly double since the late 1990s. and Brad Middlebrook, this site offers news, With this increase in attention has also come an increase in the number of Web sites Corey Seeman is assistant dean for resource and systems management at the University of Toledo, e-mail: corey. that have been developed. Many of these [email protected] have been prepared by government agencies, © 2005 Corey Seeman C&RL News October 2005 646 links, and information on autism for parents, the Beach Center site and elsewhere. Access: teachers, therapists and doctors. One of its http://www.beachcenter.org/stories/. stated goals is to provide balanced infor­ •The Geek Syndrome. Great article from mation for families of recently diagnosed Wired magazine by Steve Silberman on the children. Sections of the site include: quick rate of autism and Aperger’s Syndrome among facts, medical issues, diet, books, news, the children of Silicon Valley companies and applied behavior analysis (ABA) resources, Microsoft. Access: http://www.wired.com action plans for newly diagnosed children, /wired/archive/9.12/aspergers_pr.html. and conferences. Access: http://www. •Temple Grandin’s Website. In the ASD autisminfo.com. community, Temple Grandin is a rock star. •Autism Page of Patient Centered She is one of the most well­known adults with Guides. A list of printed material, online autism in the world. Diagnosed with autism as resources, and organizations taken from a young girl, Grandin went on to get her Ph.D. Appendix A of Mitzi Waltz’s excellent book, and become one of the leading figures in the Autistic Spectrum Disorders: Finding a Diag­ study of livestock behavior and the design nosis and Getting Help (O’Reilly & Associates, of humane cattle slaughter facilities. Access: 2002). This resource is valuable, albeit a bit http://www.templegrandin.com/. old. The main page for those resources, www. •Tony Attwood’s Web site. Tony patientcenters.com/autism/, is also valuable Attwood is one of the leading fi gures working and includes excerpts from the book. Ac­ with ASD and has presented on the subject cess: http://www.patientcenters.com/autism all over the world. This Web site includes /news/resources.html. many resources on Asperger’s Syndrome and •Autism Resources. Excellent general high functioning autism, including papers he information resource on autism. Of note are has delivered, excerpts of current articles, the links to other sites, book listings, and workshop notes, links to Web resources, “Advice to parents who discover their child is and other information. Access: http://www. autistic.” This includes messages from parents tonyattwood.com.au/. on what they would have liked to know when their child was diagnosed with autism. Access: Government sites http://www.autism­resources.com. •Centers for Disease Control and •Autism: The Hidden Epidemic? Links Prevention (CDC). The CDC’s National to articles and videos from the series of spe­ Center on Birth Defects and Developmental cial reports from NBC News and MSNBC in Disabilities is a very good resource on autism. February 2005. Included are numerous stories These pages have a number of resources and personal accounts of the hopes, dreams, that are useful, including a page describing successes, and realities of living with ASD. autism, updated list of ASD projects at CDC, (Another good source for media reports is Na­ list of governmental projects at other federal tional Public Radio at www.npr.org.) Access: and state agencies, resources, a great kids’ http://www.msnbc.msn.com/id/6844737/. page (geared to children between 4th and 6th grade) for teaching about ASD, and an excel­ Narratives and key fi gures lent introductory section entitled “About Au­ •Autism Real Stories and Tips. From tism.” Access: http://www.cdc.gov/ncbddd/dd the University of Kansas Beach Center on /ddautism.htm. Disability, the “Real Stories and Tips” sec­ •Interagency Autism Coordinating tion includes narratives collected by staff or Committee (IACC). This committee coordi­ through Web site users. These stories are brief nates autism research and other efforts within and help provide the many different faces of the Department of Health and Human Servic­ autism and related disorders. The site also es. The National Institute of Mental Health at includes links to other ASD resources on the National Institutes of Health has been des­ October 2005 647 C&RL News ignated the lead for this activity. This page in­ about autism and cludes links to numerous reports of the activi­ to fund research. ties of the committee and other government The site includes agencies. Access: http://www.nimh.nih.gov a large number /autismiacc/index.cfm. of links to other •National Institute of Mental Health Web sites and re­ (NIMH). An excellent basic source of infor­ sources that are mation on ASD, NIMH gives a nice over­ valuable for people studying autism. The “Sci­ view of the condition, signs and symptoms, ence News” section will be of interest to people treatment options, and local services. NIMH wishing to view the latest scientifi c research. provides a link to the online document Access: http://www.cureautismnow.org. “Autism Spectrum Disorders (Pervasive •National Alliance for Autism Re­ Developmental Disorders)” (2004). Access: search (NAAR). Founded in 1994, NAAR http://www.nimh.nih.gov/healthinformation raises funds to support and accelerate bio­ /autismmenu.cfm. medical research focusing on ASD. NAAR •Principal Findings from the Epide­ also publishes the “NAARRATIVE” newslet­ miology of Autism in California (M.I.N.D. ter, with updates on funding and research Institute at University of California­Da­ undertaken with their support. Current and vis). Among many excellent state reports is back issues can be viewed on the Web site. this landmark study that was commissioned Access: http://www.naar.org/. by the California Legislature and submitted on October 17, 2002. The study showed an MMR and vaccines controversy increase of reported cases of autism of 273 •Autism Research Institute (ARI). ARI percent from 1987 to 1998. This 70­page has been a leader in exploring the association report is one of the most important docu­ between the MMR (Measles, Mumps, German ments examining the increased rate of ASD. Measles [Rubella]) vaccine and other drugs as Access: http://www.dds.ca.gov/autism/pdf/ the possible cause of autism. ARI is led by study_fi nal.pdf. Bernard Rimland, one of the founders of the Autism Society of America and one of the Scientific and medical issues most respected voices in the field. This site •Autism Network Resources for includes links to their case that the vaccine Physicians. Aimed at physicians, this site is has a part in the spread of autism along with valuable for parents and others looking for other strong information on autism. Access: medical research on autism and ASD. This site http://www.autismwebsite.com/ari/vaccine includes links for autism research, medical /vaccine.htm. treatment options, articles, reports, hearings, •Centers for Disease Control and Pre­ conferences, message boards and others. The vention (Vaccines and Autism Theory). “Autism Research and Related Links” section CDC has been an active proponent for the of the site has extensive resources for fi nding safety of the MMR vaccine and has conducted research being done in a number of areas on studies to examine the hypothesis that vaccines ASD, university­based programs, and a who’s have a part in the cause of autism in children.
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