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Observing World Autism Awareness Day: ARI Calls for Meaningful Progress Toward a Standard of Care in 2012
This is the beginning of Autism Awareness month, and today is World Autism Awareness Day. The Autism Research Institute (ARI) views the entire month of April as an opportunity for the autism community to provide the general public with relevant information about autism, as well as to give the autism community a chance to step back and evaluate what is currently happening in the field and where we are headed.
I can assure those on the autism spectrum and their families that researchers and other professionals worldwide are working tirelessly to better our understanding of autism and to develop an accepted quality of care for everyone on the spectrum.
Autism is a heterogeneous disability that encompasses a wide range of symptoms, behaviors, and medical and sensory problems. This variability has made it difficult to figure out how to provide necessary services and support to those on the spectrum and their families. The latest prevalence rate published just a few days ago by the Center for Disease Control indicates that 1 child in 88 is on the autism spectrum. Honestly, this was no surprise, given the large number of families who have contacted us over the past few years and numerous discussions with the professionals in the field.
As far as determining the roots of the condition, we appeal to the federal government to allocate a much higher portion of the funds already earmarked for autism to the study of epigenetics, in which environmental toxins can also be investigated simultaneously with genetics; too much energy has been focused on the genetics-only approach, and it has led nowhere.
An epigenetic approach to autism is appropriate, given the increasing number of supportive published studies. For example, lead author Dr. Hallmayer of Stanford University conducted a recent study investigating the role of genetics and the environment in autism. The study was funded by both NIMH and Autism Speaks. The results from a relatively large sample of twins clearly showed a large environmental impact on autism, while genetics had much less of an impact.
We at ARI are also concerned with the new proposed DSM-5 definition of autism. The committee in charge appears to be inflexible; based on a quote in the New York Times, the chair of the committee stated "It becomes a cost issue." This type of thinking is not scientific, and it is morally wrong to define a disability based on financial concerns. Many, if not most, of the professionals and parents within the autism community are not supportive of this proposed definition. Changes to the DSM will no doubt leave many people without needed services and support, which will in turn impact their own lives, their families, and the general community. If the DSM-5 is not changed, another "accepted" definition will likely be sought and accepted by professionals in the autism community, but institutional providers of services, like insurance companies and school boards, will adopt the least expensive route and people on the spectrum will suffer as a consequence.
On another note, these are exciting times because new research reports are published almost daily in many areas, including behavior, education, medicine, health, diet, supplementation, and sensory issues. However, due to historical wranglings, territorialism, and even financial gain, there is little networking and communication among these various treatment 'groups.' This has lead to much misinformation and distrust among professionals who study and/or implement these interventions. Consequently, families are confused about the best things to do for their child, leading to less-than-optimal treatment strategies.
We at ARI urge researchers and professionals to communicate better with one another, to side-step assumptions and to ask appropriate questions in order to clarify misinformation.
There are more adults on the autism spectrum than ever before, and we have just begun to figure out how best to provide them with appropriate support and services. Given the large number of people reaching adulthood in the very near future, we also need to learn from them to glean insight into autism. This will result in a better understanding of the challenges they encountered during childhood and now in adulthood. For example, many adults on the spectrum complain about sensory and medical problems that have been untreated since childhood.
And finally, much has been learned about autism over the past 10 years, especially in the United States. Families and professionals around the world are desperately trying their best to keep up to date with the field. Although the Internet has revolutionized communication within the autism community, much of the information is printed only in English; too often this information is not applied to evidence-based services and support by government and private organizations and agencies abroad. We must do a better job communicating and networking with autism organizations and families worldwide.
Although I may be viewed as an optimist, I am certain that we can make positive changes within the autism community by networking, communicating, and doing whatever we can to be more tolerant of various viewpoints and perspectives.
Autism impacts hundreds of thousands of people, and it is truly a global community.
We're all in it together!
Steve Edelson, PhD
Executive Director, Autism Research Institute
Join Us at an Upcoming ARI Conference:
- Spring Conference April 26-29, 2012 in Newark, NJ
- Fall Conference Oct. 11-14, 2012 in Garden Grove, CA
FOR IMMEDIATE RELEASE
March 6, 2012
EXPERTS PRESENT LATEST FINDINGS ON TRIGGERS AND THERAPIES AT THE AUTISM RESEARCH INSTITUTE (ARI) CONFERENCE APRIL 26-29 IN NEWARK, N.J.
Held during Autism Awareness Month, ARI Conference covers emerging topics on environmental toxins, dietary issues and treatments, and advocacy for children and adults on the “spectrum”
Newark, N.J. – The Autism Research Institute, a pioneer organization in the biomedical, whole-body approach to autism, will host leading experts at the Autism Research Institute (ARI) Conference from Thursday, April 26 through Sunday, April 29 at the Newark Airport Marriott in Newark, N.J. The conference is open to the public and cost to attend is $79 per day, with discounts to those who qualify. Free evening workshops are also open to the public. The ARI Conference offers autism resources for parents, caregivers, pediatricians, and other medical and non-medical practitioners (CME and continuing education credits offered).
Held during Autism Awareness Month, the four-day summit of autism thought leaders will review and discuss the latest scientific research on environmental and dietary elements that exacerbate autism symptoms. Experts will also share proven strategies for treatment and remediation of symptomatic behaviors.
“All too often, autism is mismanaged when symptoms are addressed as isolated issues,” said ARI Conference Director, Denise Fulton. “The ARI Conference brings together scientific research and real-life cases that show autism treatments are more effective when approached with a whole-body strategy and an understanding that autism symptoms are interconnected. For example, gastrointestinal issues can often be the root of behavioral challenges and sleep problems.”
ARI Conference featured keynote speaker will be Dr. Martha Herbert— pediatric neurologist, member of the faculty at Harvard Medical School, researcher and author of the new book, The Autism Revolution: Whole Body Strategies For Making Life All It Can Be (Random House, March, 2012). In her book, Dr. Herbert presents the paradigm-shifting approach: autism can essentially be unwound with step-by-step restoration of a child’s whole-body health. The Autism Revolution is the first Harvard Health Publications-backed book on autism, and all ARI Conference attendees will receive a copy.
“Pharmaceutical treatments should not be the automatic prescription as they often are today for many medical practitioners,” added Fulton. “There are many non-drug autism treatment options with which parents have found success.”
With General, Science, Nutrition, Practitioner and Adult Services tracks, ARI Conference includes workshops and sessions on the topics of causal links, treatment, early intervention, behavior/sensory issues, recovery, adult autism, environment and lifestyle, education and care. A sample of topics and presenters include:
• Why is Diet Particularly Important in Autism? – Peta Cohen, M.S., R.D.
• How to Get the Most out of Your Practitioner – Nancy O’Hara, M.D.
• The Role of Environmental Toxins in the ASD Epidemic – Stuart Freedenfeld, M.D.
• How to Choose the Right Interventions – Vicki Kobliner, M.S., R.D.
• Nutritional Supplements: What to Do First and Symptom Specific Recommendations – Dana Laake, R.D.H, M.S., L.D.N.
• Maternal Gene-Environment Interactions During Pregnancy: Risk of Autism and Potential for Prevention – S. Jill James, Ph.D.
For more information on sessions offered, continuing education credits and registration, visit www.ariconference.com. Follow @TreatingASD and @ARIconference with the #ARICON hash tag on Twitter for updates.
About the Autism Research Institute
The Autism Research Institute (ARI) is a non-profit 501(c)3 organization focused on conducting and sponsoring research aimed at improving the quality of life for today’s generation of children and adults with autism spectrum disorders. Founded in 1967 by Bernard Rimland, Ph.D., ARI is the oldest autism research organization in the world with a data bank of over 40,000 anecdotal case histories from more than 60 countries. Over the past three decades, ARI has pioneered a number of successful treatments supported by experimental and clinical evidence. ARI promotes the understanding of autism via conferences and research, but does not endorse or reject specific treatments or professional services.
ARI Conference Web Site