Friday, September 27, 2019

Autistic History: ARI, DAN Protocol and MAPS

Autism Research Institute (ARI) was started in 1967 by Bernard Rimland (1928-2006). He was a psychologist and autism researcher. His firm belief is "Autism is treatable." He helped dispel the myth that autism is caused by "cold mothers." At the end of his career, he falsely stated that vaccines cause autism. ARI created the Defeat Autism Now (DAN) protocol.

ARI has been at the front of autism research for more than 50 years. They pioneer in biological research, educational outreach and networking with worldwide organizations. They admit that they do not know that cause of autism. They view autism as a treatable "genetically hard-wired disease."

ARI has created the infamous Autism Treatment Evaluation Checklist (ATEC). This is not used in diagnosis. This is used by charlatans pushing quack treatments. Kerri Rivera uses the ATEC in her dosing procedures.

They claim to be an advocate for autistic rights but actually autistic people know better. They cannot preach the DAN! protocol and be an autistic advocate organization.

They released a statement on MMS 

"Given these issues, we advise against using Miracle Mineral Solution at this time. We hope parents will remain critical of unsubstantiated claims that children have recovered or greatly improved in the absence of objective proof. We also strongly encourage any parents who choose to administer MMS to their children to report it to their physician so that side effects can be monitored."

Kerri Rivera with Rimland: 

Kerri Rivera translated Rimland's book "Infantile Autism"



DAN! Protocol

History of DAN!

Defeat Autism Now (DAN!) is a project by the ARI that was launched in 2005. It came out of discussions between Rimland, Jon Pangborn (PhD), and Sidney MacDonald Baker (MD). They all were interested in different approaches to treating autistic children. Both Rimland and Pangborn both had autistic relatives. Pangborn was a chemical engineer. From 1988 until 1995, Pangborn served as the president of a laboratory that conducted hair and urine tests which determine nonexisistent heavy metal toxicity. He also consulted at Kirkman Laboratories. They market "over 100 products dedicated to nutritional supplementation in autism." Baker is a pediatrician who had a history of prescribing supplements for numerous patients. Rimland and Baker met in 1978. They met at a talk where Rimland was speaking. Baker told Rimland that nothing he prescribed his patients had worked as quickly as megavitamin therapy (will visit this later). Rimland also stated that Baker and Bangborn worked together in "biochemistry of autism" since the early 1980's.


ARI sponsored a three day meeting in 1995. There were about 30 professionals who discussed what they were doing. They also discussed what they believed had worked for them. Their conclusions were based on observations reported by parents to their healthcare professionals and responses to questionaires.  There was no scientific study. As a result of this meeting, there was a consensus document. It was co-authored by Baker and Pangborn. It was published in 1996. It was called "Biomedical Assessment Options for Children with Autism and Related Problems."It was also called the Dan! clinical manual or the DAN! Protocol. In 2005, it went through its sixth revision. The sixth revision was published as a large book called "Autism: Effective Biomedical Treatments."

In 1967, Rimland was enouraging parents to rate experiences when putting children through different treatments. This is how they know how well  treatment worked. Essentially, they experimented on these vulnerable children. He thought if there was enough data, there might be enough evidence to see which treatments were effecetive. 

In 2009, ARI stated that data had been collected from over 27,000 parents. The report included data from about 40 different standard medications and 40 types of off label treatments. The scale used was:
No effect
Got better
Got worse

Rimland, Baker and many others insist that the parent reports are evidence of effective treatments. According to the scientific method, this is not evidence. It is anecdotal at best. To determine if something is effective, a sample of people using the method must to better than similar people who do not use the treatment. This did not happen. This survey identified methods that parents tried and did not use scientific evidence to measure its effectiveness. 

ARI still continues to focus on biomedical issues related to autism. It also supports ABA and genetics. They provide resources and information on the most "troubling" aspects of autism. 


DAN! Protocol

The protocol was based on the belief that autism is caused by a lowered immune response, external toxins from vaccines and other factors including problems from foods. 



In the latest edition:  "We do not have a protocol for treating autism . We have a way of addressing individuality in the context of an epidemic that has environmental causes . . . Our patients have responded to a variety of approaches that depend on the makeup of each child . . .every treatment is really a diagnostic trial . . . "the sequence of options may change depending on the response to treatment . . . please resist any inclination to view the treatment options . . .  as being aimed at any particular symptom . . . each treatment, when effective, treats all symptoms, though not always to the same degree. When a particular therapy addresses a particular need to get or be rid of a crucial item in an individual's biochemical and immune balance, the result us healing of the whole organism."

The Fall of DAN! 

The ARI discontinued DAN in 2011. One main reason was the objection to the name "Defeat Autism Now." The name was appealing to some parents, there were many autistic advocates found it offensive. 

According to ARI in a press release: 
"Although clinicians receive similar and consistent information at the [DAN] seminars, there is no uniform way patients are subsequently treated, even acknowledging individual differences; many perceive the clinician list as a list of recommended doctors—in reality, the list simply contains the names of professionals who attended our clinician seminars. We do not certify them, and as a result, we cannot assure people that every practitioner on the list always provides the highest quality service. We do know that families need a way to locate quality practitioners in their community, and we have added a page of advice on that process to our website."

ARI does not practice DAN but its fairly easy to find others that do. One search on google led me to DAN and MAPS doctors. There is a new practice Medical Academy of Pediatric Special Needs (MAPS). This is DAN but under a different name. TACA fully endorses it under both names. 






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