Autism Research Institute

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The Autism Research Institute (ARI), established in 1967 by Bernard Rimland, is a San Diego, California, based nonprofit that serves primarily as a resource for information on autism and autism spectrum disorders. Stephen M. Edelson, became the director of the Institute upon Rimland's death in 2006.

Quackwatch includes the Autism Research Institute on its list of "Questionable Organizations".[1] It holds to the medically-discredited[2][3][4] belief that autism is caused by vaccinations.[5][6][7] It also suggests chelation therapy, a treatment which is dangerous enough to have caused multiple deaths.[8][9][10][11]

In addition to these pseudoscientific positions, the Institute holds that autism can be treated through a combination of intensive behavior modification, such as applied behavior analysis, and a wide variety of unproven biomedical interventions, including the use of drugs, dietary supplements, and special diets.[9] To this end they created the Defeat Autism Now! (DAN!) project. DAN! included a recommend set of treatments, the "DAN! protocol", a registry of DAN! practitioners and an annual conference.[12] ARI ended the DAN! registry in 2011.[13] The conferences ended in 2012.[14]

History[edit]

The Institute was founded in 1967 by Bernard Rimland, a research psychologist. Rimland’s book Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior was published in 1964. Rimland was the first to authoritatively challenge the prevailing theory of the time, the refrigerator mother theory (that autism was caused by unloving mothers), by providing evidence that autism is a biological disorder. He founded the Institute to promote applied behavior analysis as an intervention for autism.[15]

Activities[edit]

The Institute's website lists the following activities:

  • Conducting and funding research on autism treatments.[16] The scientific rigor of the Institutes has been questioned and studies they have sponsored have been criticized as unethicial and poorly designed.[17]
  • Publishing a quarterly newsletter, Autism Research Review International.[18]
  • Maintaining a database of anecdotal parent reporting in the world, with over 40,000 entries from 60 countries.[16] This database is self-selected and self-reported. Chelation is one of the highest rated treatments in this database.[19]

Treatments[edit]

In an interview with About.com, Director Steve M. Edelson said "if a practitioner claims to ‘cure’ autism, run in the other direction."[20] The Institute’s focus is on evidence-based treatments.[citation needed]

The Institute is an advocate for what it calls a "biomedical" approach for autism treatment,[21] compiling evidence from autism research experts and parents to share information about the most viable treatments for common autism symptoms. The treatments advocated by the Institute are not supported by research.[22][23]

The Institute is also a longtime advocate of applied behavior analysis,[15] believing it should complement other autism interventions.

The Institute's position on controversial treatments/issues:

  • Vaccines – The Institute's website states it supports safe vaccination.[24] It does not make clear what it considers "safe vaccination". Their website continues to state, "Research on this topic is ongoing and continues to track new developments in this field of study, among others. The Institute continues to seek potential trigger factors for autism."[24] David Gorski has described the Institute and DAN! as, "largely based on the discredited idea that vaccines cause autism."[5] A 2010 meta-analysis concluded, "Convincing evidence from multiple countries shows no association between MMR vaccine (or thimerosal) and autistic disorders. The origins of this controversy incorporate unethical conduct and misleading research."[25] Bernard Rimland was a staunch believer that vaccines caused autism and advocated this position as president and founder of the Institute.[7] A large 2014 meta-analysis of research exploring vaccines and autism concluded, "Findings of this meta-analysis suggest that vaccinations are not associated with the development of autism or autism spectrum disorder. Furthermore, the components of the vaccines (thimerosal or mercury) or multiple vaccines (MMR) are not associated with the development of autism or autism spectrum disorder."[26]
  • Chelation – The Institute's website states, "Chelation is not a 'cure' for autism.[24] The Institute has advocated this dangerous treatment.[9][10][11] There is no evidence to support chelation as a treatment for autism.[27] Chelation therapy is not approved by the US Food and Drug Administration for the treatment of autism and unapproved use has led to harm and deaths.[28] Doctors affiliated with the DAN! program have been sued for using chelation therapy to treat autism.[29] A test commonly used to support chelation therapy was misused.[19] A study of chelation therapy for autism sponsored by the National Institute of Mental Health was halted after a National Institutes of Health review board found evidence for benefit to study participants lacking and more than minimal risk present.[30]
  • Gluten-free, casein-free diets – the Institute believes that this diet can be beneficial. Current research does not support this belief.[22]
  • The Institute asserts that pharmaceutical treatments should be approached with caution.[31]

Research[edit]

The Institute has awarded more than $1.5 million in research grants since 2009. Grant recipients include Massachusetts General Hospital, Cleveland Clinic, UCLA, Arizona State University, UC Davis, and Columbia University.[32][non-primary source needed] It also funds Tissue Banks for the National Institute of Child Health and Human Development at the University of Maryland.[33][non-primary source needed]

Conference[edit]

The Institute was the sponsor and parent organization of the Defeat Autism Now! (DAN!) program founded by Bernard Rimland with John Pangborn and Sidney Baker in 1995.[19][34][35] Andrew Wakefield was a prominent speaker at the now defunct DAN! Conferences until 2009. ARI removed Wakefield from its speaker lineup in 2010,[36] after he was sanctioned by the General Medical Council in the UK [37] and his research was retracted by a respected British medical journal.[38][39]

The Institute also sponsors the annual meeting of the International Society for Autism Research (INSAR), which is known as the International Meeting for Autism Research (IMFAR). First convened in 2001, the first and primary aim of the meeting is to promote exchange and dissemination of the latest scientific findings and to stimulate research progress in understanding the nature, cause and treatments of ASD. The meeting also promotes training for pre/post doctorates to advance research of ASD. The INSAR publishes the Autism Research Journal.[40][41]

Affiliates[edit]

  • Autistic Global Initiative (AGI) – AGI is an Institute program staffed by adults with autism who are committed to increasing quality infrastructure for adults with autism.[42]
  • The Global Autism Alliance, a partnership created in response to a global need for networking, communicating, and collaborating among autism groups. This program is housed at ARI; Stephen M. Edelson, ARI director, is the president of the Alliance.[citation needed]

Funding[edit]

ARI is a 501(c)3 non-profit organization.[43] Almost all ARI operations and initiatives are funded by private donations. Over 80 cents of every dollar donated to ARI goes directly to programs and research projects.[44]

See also[edit]

External links[edit]

References[edit]

  1. ^ Barrett, Stephen (June 10, 2013). "Questionable Organizations: An Overview". Quackwatch. Retrieved June 2013. 
  2. ^ "Measles, mumps, and rubella (MMR) vaccine autism fact sheet". Immunization Safety Office, Office of the Chief Science Officer, Centers for Disease Control and Prevention, US Dept. of Health and Human Services. October 22, 2007. Archived from the original on 2008-04-07. Retrieved 2008-12-21. 
  3. ^ Immunization Safety Review Committee, Board on Health Promotion and Disease Prevention, Institute of Medicine, National Academy of Sciences; McCormick, M.C.; Bayer, R.; Berg, A. et al. (May 14, 2004). Immunization Safety Review: Vaccines and Autism. Washington, DC: National Academies Press. ISBN 0309532752. 
  4. ^ NHS Immunisation Information (1 March 2003). "MMR The facts". National Health Service (NHS), UK Dept. of Health. Archived from the original on 2013-01-07. Retrieved 2007-09-19. 
  5. ^ a b Gorski, David (October 8, 2009). "Monkey business in autism research, part II". Science-Based Medicine. Retrieved 2014-05-11. 
  6. ^ "Vaccinations". autism.com. ARI. Archived from the original on 2010-05-19. 
  7. ^ a b "Tributes to Our Founder". autism.com. ARI. Retrieved 2014-05-27. 
  8. ^ "Boy with autism dies during 'chelation therapy'". BAAM Behavior News. Behavior Analysis of Michigan (BAAM). 30 August 2005. 
  9. ^ a b c Adams, James B. (April 2007). "Summary of biomedical treatments for autism". autism.com (ARI Publication #40). ARI. 
  10. ^ a b Woznicki, Katrina (August 26, 2005). "British boy dies after chelation therapy for autism". MedPage Today. Retrieved 2014-05-11. 
  11. ^ a b Adams, James; Edelson, Steve (November 5, 2009). "Chelation therapy drug found safe and beneficial for autistic children" (Press release). Autism Research Institute. 
  12. ^ Rudy, Lisa Jo (July 22, 2009). "What is a Defeat Autism Now (DAN!) autism doctor?". About.com. Retrieved 2014-05-11. 
  13. ^ Rudy, Lisa Jo. "DAN! (Defeat Autism Now) Is No More". 
  14. ^ "Disbanding the ARI Conference". autism.com. ARI. 
  15. ^ a b Rimland, Bernard (1999). "The ABA controversy". Autism Research Review International 13 (3): 3 – via autism.com. 
  16. ^ a b "About ARI: About our work". autism.com. ARI. 
  17. ^ Gorski, David (June 4, 2012). "Luc Montagnier and the Nobel disease". Science-Based Medicine. Retrieved 2014-05-27. 
  18. ^ "Subscribe to the Autism Research Review International". autism.com. ARI. Retrieved 2014-05-27. 
  19. ^ a b c Tsouderos, Trine; Callahan, Patricia (November 22, 2009). "Risky alternative therapies for autism have little basis in science". Chicago Tribune. Retrieved 2014-05-27. 
  20. ^ Rudy, Lisa Jo (November 4, 2011). "Biomedical treatments for autism from the Autism Research Institute". About.com. 
  21. ^ Edelson, Steve. "Talk about recovery". autism.com (editorial). ARI. 
  22. ^ a b Buie, T.; Campbell, D.B.; Fuchs, G.J.; Furuta, G.T. et al. (2010). "Evaluation, diagnosis, and treatment of gastrointestinal disorders in individuals With ASDs: A consensus report". Pediatrics 125 (Suppl.): S1–18. doi:10.1542/peds.2009-1878C. PMID 20048083. 
  23. ^ Virués-Ortega, Javier (2010). "Applied behavior analytic intervention for autism in early childhood: Meta-analysis, meta-regression and dose–response meta-analysis of multiple outcomes". Clinical Psychology Review 30 (4): 387–99. doi:10.1016/j.cpr.2010.01.008. PMID 20223569 – via interactingwithautism.com. 
  24. ^ a b c "FAQs about ARI". autism.com. ARI. 
  25. ^ Allan, G.M.; Ivers, N. (October 2010). "The autism-vaccine story: Fiction and deception?". Canadian Family Physician 56 (10): 1013. PMC 2954080. PMID 20944043. 
  26. ^ Taylor, L.E.; Swerdfeger, A.L.; Eslick, G.D. (2014). "Vaccines are not associated with autism: An evidence-based meta-analysis of case-control and cohort studies". Vaccine. doi:10.1016/j.vaccine.2014.04.085. PMID 24814559. 
  27. ^ Willingham, Emily (November 30, 2012). "No evidence supporting chelation as autism treatment". Forbes. 
  28. ^ "Chelation: Therapy or 'Therapy'?". poison.org. National Capital Poison Center. 2010. Retrieved 2014-05-27. 
  29. ^ Brownstein, Joseph (March 9, 2010). "Father sues doctors over 'fraudulent' autism therapy". ABC News. 
  30. ^ Mitka, M. (2008). "Chelation therapy trials halted". JAMA 300 (19): 2236. doi:10.1001/jama.2008.607. PMID 19017902. 
  31. ^ "Adverse drug reactions". autism.com. ARI. Archived from the original on 2012-01-25. Retrieved 2012-03-30. 
  32. ^ "ARI funded research studies". autism.com. ARI. Archived from the original on 2012-06-24. 
  33. ^ "ARI and NICHD Tissue Bank". autism.com. ARI. 
  34. ^ Adams, James B.; Edelson, Stephen M.; Grandin, Temple; Rimland, Bernard (2004), Advice for parents of young children with autism (2004): Working paper – via autismtoday.com 
  35. ^ Eyal, Gil; Hart, Brendan; Onculer, Emine; Oren, Neta et al. (2010). The Autism Matrix. Polity. pp. 246–256. ISBN 9780745643991. 
  36. ^ Dominus, Susan (April 20, 2011). "The crash and burn of an autism guru". The New York Times. Retrieved 2014-05-11. 
  37. ^ Gorski, David. "The fall of Andrew Wakefield". 
  38. ^ Wakefield, Andres; et al (February 1998). "RETRACTED: Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children". Lancet 351 (9103): 637–641. doi:10.1016/S0140-6736(97)11096-0. 
  39. ^ Harris, Gardiner. "Journal Retracts 1998 Paper Linking Autism to Vaccines". New York Times. 
  40. ^ "About 'Autism Research'". autism-insar.org. International Society for Autism Research. Retrieved 2014-05-10. 
  41. ^ "Autism Research - Wiley Online Library". onlinelibrary.wiley.com. Wiley Periodicals. Retrieved 2014-05-09. 
  42. ^ "Coming Soon!". autismwebsite.com. Retrieved 2014-05-09. 
  43. ^ "Autism Research Institute: IRS". Charity Navigator. Retrieved 2014-05-10. 
  44. ^ "Charity Navigator Rating - Autism Research Institute". Charity Navigator. Retrieved 2014-05-10.