Below is a three- part series of articles that ran in the ARI E-Newsltters May-July 2012.
Part One: ARI Through the Decades
Although recent changes at ARI have been discussed in various editorials and presentations, I thought I would write a series of articles that provide a historical perspective and describe how changes at ARI over the past few years reflect the vision and foundation that were created by Dr. Bernard Rimland.
- Steve Edelson, Ph.D, Director, Autism Research Institute
In his 1964 seminal book, Infantile Autism: The Syndrome and It Implications for a Neural Theory of Behavior, Dr. Rimland convincingly rejected Bruno Bettleheim's parent-blaming theory of causation. Afterward, Dr. Rimland started seeking effective ways to treat autistic children; he was impressed by parent reports and early research findings on behavior modification techniques (later termed "Applied Behavior Analysis" or ABA). In 1965, he founded the Autism Society of America, primarily to inform parents about this new and innovative treatment.
Throughout the 1970s and 1980s, ARI focused much of its efforts on the orthomolecular approach to treatment, in which nutritional supplements are used, sometimes at therapeutic levels, to improve various medical and psychiatric conditions. During this period, Dr. Rimland discovered that vitamin B6 with magnesium was effective in treating many children on the spectrum. He found that di-methyl-glycine (DMG) was also helpful to many.
When the prevalence of autism began to rise in the mid- to late-1980s, there were no evidence-based accepted treatments available. ABA was considered a form of child abuse by many in the autism community; the treatments of choice were powerful drugs that simply dampened "inappropriate" behavior, such as Haldol, Tegretol, and Mellarill. At the time, ARI continued to endorse ABA and nutritional supplements. In addition, parents began reporting benefits from restricted diets; Dr. Rimland started to endorse diets such as the "caveman" diet and the milk-free diet. Due to a limited budget, ARI performed mostly survey research and funded small-scale studies. Dr. Rimland also recruited me to work with him as a research associate in the mid-1980s.
In the late 1980s and early 1990s, ARI expanded its efforts to study sensory problems, including hearing, vision, and deep pressure. A few years later, in the mid-1990s, ARI widened its focus and began promoting a whole-body approach to autism, with an emphasis on the underlying biological mechanisms. The "Defeat Autism Now!" project began.
The Defeat Autism Now! approach was spearheaded by Drs. Rimland, Sidney Baker, and Jon Pangborn. Its primary goal was to raise awareness that many individuals on the autism spectrum suffered from mild to severe medical problems, such as gastrointestinal (GI), immune, and metabolic issues. Many, but not all, of the treatments associated with the biomedical approach were based on traditional interventions that were often prescribed to non-autistic individuals who experienced similar medical conditions. The word "Now" with an exclamation point was chosen because they wanted to expedite the advancement of treatment and alleviate the pain and discomfort often associated with these medical conditions.
Early in the 2000s, ARI began offering clinician seminars to inform physicians of the biological mechanisms associated with GI, immune, and metabolic problems, as well as provide information about various treatments. Around the same time, ARI began posting a registry of clinicians who attended these seminars on their website. However, many people interpreted this registry as a list of trained or certified doctors, even though they had merely attended the seminars. The list of clinicians was removed at the end of last year (December, 2011); the quality of services provided by the listees varied, and we realized that a certification process, similar to the BCBA certification, was very much needed to ensure only the best care for those on the autism spectrum. Rather than risk losing our momentum by transforming into a certifying organization, ARI has chosen to return to its roots, focusing on the treatments that seem to bring the greatest improvement to the greatest number of people-namely dietary modification and nutritional supplements; in the words of Dr. Sidney Baker, "Remove what is causing harm, add what is missing."
Part Two: Dr. Rimland's Pioneering Spirit
In the late 1950s, Dr. Bernard Rimland and his wife realized that their son Mark had autism. Given the lack of information and support available from the medical community, Dr. Rimland did what he could for nearly half a century to uncover the underlying causes and determine the most effective treatments for his son-- and for countless others on the autism spectrum.
Dr. Rimland stressed the concept of quality of life for all those with a developmental disorder. He understood the importance of investigating underlying causes of autism, but he always felt a real urgency to help people on the spectrum in the here and now, especially those who suffered from medical and sensory problems.
His vision was for pediatricians worldwide to be knowledgeable about autism, and equipped to provide families with advice on how best to develop a treatment plan. He also envisioned obstetricians advising what to do and what not to do during preconception and pregnancy.
Rimland knew that research was needed to demonstrate treatment efficacy, eventually resulting in an accepted, evidence-based standard of care. Without such research, families would continue to struggle to find effective treatment strategies, sometimes relying on questionable and untrustworthy sources.
When parents and clinicians shared their experience about new treatments, Dr. Rimland believed that other parents as well as professionals had the right to know about such innovative interventions. Transparency was always important to him; he felt strongly that everyone should receive full disclosure about treatments.
From time to time promising treatments have always captured the attention of families and clinicians in the autism community. Dr. Rimland closely monitored both the published research and the anecdotal reports, as ARI does to this day. Sometimes unsupportive research is published, complemented by disappointment for parents and clinicians. Rather than hold to our personal beliefs, we must always remain open to new information in order to avoid compromising the safety of our loved ones or wasting valuable time and money.
Dr. Rimland strongly opposed the prescription of mood-altering drugs, since they typically inhibit or mask symptoms, and can leave the subject in a stupor. He felt that treatments should be aimed at treating core symptoms, so he supported the orthomolecular approach to treatment, including nutritional supplements and restricted diets.
Given the heterogeneity of the autism community, Dr. Rimland was well aware that no one treatment will help everyone on the autism spectrum; he was often puzzled why researchers would sometimes conclude that a treatment was ineffective when they simply grouped everyone on the spectrum together for their analyses, without considering individual differences. His initial work on subtyping autism, which continues today at ARI, might someday determine the appropriate interventions for each person.
Because some professionals worry about giving parents false hope regarding prognosis, they often wind up giving no hope at all. Dr. Rimland witnessed first-hand with his son, and from reports from thousands of parents, that many, if not most, on the autism spectrum could benefit from treatment.
Throughout his almost 50-year career in autism, Dr. Rimland was constantly checking the pulse of the community. His plan for ARI was that it would always progress forward by monitoring the quality and the magnitude of the research, while listening carefully to the needs of families and those on the autism spectrum. Similar to all other successful organizations, ARI has adapted to change.
The Autism Research Institute continues to follow Dr. Rimland's lead in clearly informing families and their sons/daughters about the current status of research and therapies through our conferences, hardcopy newsletter and e-newsletters, website, discussion groups, and much more. In addition, ARI continues to conduct and fund research, sponsor think tanks, and network researchers, clinicians, and families.
Part Three: What is ARI Doing?
Since Dr. Bernard Rimland’s passing in November, 2006, the Autism Research Institute (ARI) continues to publish its hardcopy science newsletter, the Autism Research Review International; organizes think tanks as well as moderating an active Internet discussion group of researchers and experienced clinicians; maintains one of the most popular websites on autism, www.autism.com; and sponsors biannual conferences.
In addition, ARI has increased its efforts in many ways:
• added to the budget to fund more research,
• joined in direct involvement in formal research projects,
• expanded our conference science tracks from one day to two days, and added an adult track,
• established a toll-free calling center (833.281-7165),
• sponsored a GI-tissue bank at MassGeneral, a whole-body tissue bank at the University of Maryland, and a control-specimen bank at the Health Research Institute in Warrenville, Illinois
• moderated three Yahoo discussion groups,
• translated many of our publications into 15 languages,
• introduced autism apps for Apple and Android devices,
• co-sponsored the International Meeting for Autism Research (IMFAR) for the past three years,
• orchestrated the networking of over 100 non-profit organizations through the Global Autism Collaboration and the Global Autism Alliance
• sponsored the Autism Network for Deaf/Hard of Hearing and Blind/Visually Impaired
• published three additional e-newsletters
• Adults with ASD eBulletin
• The Autism Network for Deaf/Hard of Hearing and Blind/Visually Impaired
• Research in Autism to inform obstetricians, pediatricians, and nurses about the most current scientific research.
And finally, Dr. Rimland was very much concerned with the quality of life for adults on the spectrum. Although he always had great respect for everyone on the spectrum, his biggest concern was for those with severe behaviors, such as self-injury and aggression. Many of Dr. Rimland’s long-time supporters and friends were people who requested information from ARI on how best to help their grown sons and daughters.
In 2003 we started an adult initiative; our plan was to edit an advice book and then produce a series of videos on adult-related topics. Dr. Rimland and I asked numerous parents who had adult sons and daughters on the spectrum to contribute to the book. Unfortunately, he passed away while we were still collecting these stories. Fortunately, one of ARI's Board members, Jane Johnson, along with Anne Van Rensselaer, edited the book, published in 2007 (Families of Adults with Autism: Stories and Advice for the Next Generation). We are producing videotapes on adult-related topics. These include lectures and discussions on topics that are presented at our conference adult track; they are uploaded to ARI's website.
In sum, ARI has changed over the past few years, but ARI has always changed in response to the current state of knowledge in the field; Dr. Rimland’s vision and values will always inspire and guide us at ARI. We need to keep our eyes open, to constantly assess the current landscape, and to proceed forward with all our might.