Community Autism Program

Report on Malaysia visit 2003

We first came to Malaysia in October 2002 at the request of the Malaysian Autism Support group  Parent's Resource for Autism . We returned to Malaysia in April 2003 to continue our work. We also visited Kota Kinabalu, Sabah, Sarawak and Ipoh during our tour. We spoke at the PR4A meeting in Kualar Lumpur, and at Kuching State Library, Sarawak in May. The principle reason for the visit was to review the progress of the families implementing the lutein-free diet program with their autistic children. Out of the original group of 70, we saw 50 children for the second time, and saw a further 60 children for the first time. The progress of the children continues to be excellent, and will be the subject of a review that we are now preparing. The two month follow-up reports are available here:  
Two-month progress report

see also: Continued success of lutein-free diet program in Malaysia

The way to recovery
To aim for recovery in autism, we first have to identify the cause. We believe that the most common cause of autism is an immune system choice during development which leads to the targeting of a dietary pigment - lutein -  by the immune system (we have described how and why this happens, and the evidence for it, in our literature). This immune choice also leads to a cascade of reactions which differ according to various factors, (immuno-)genetic, environmental, family history, diet, and the inherent strength of the individual. Treating the individual means assessing all of these factors, designing an individual diet with supplementation if needed, and recommending additional interventions and supports based on how the individual is responding.

One of the most significant findings in autism is an immature development of the limbic system - the emotional-language-learning system of the human and mammalian brain - leading to delay or arrest in language and emotional development. We believe that the continual immune response to dietary lutein is registered by the amygdala - the central clearing house of the limbic system - as a panic (fight-or-flight) reaction. Learning cannot proceed as long as the emotional center is in a state of panic - the mammalian experience of immediate threat to survival.

After approximately 12 days lutein-free, the immune system begins to calm down and we often see the first signs of improvement. It usually takes up to 16 weeks to see the first signs of an awakening of the limbic system, emotional expression and the availability for learning.  This time frame is fairly consistent.

Once awakening begins, we assess where the individual is developmentally, and look at many therapeutic, educational, behavioral and sensory strategies which can bring about progress in these areas. This was the focus of many of the discussions we had with parents and professionals, as we plan the next stage in the recovery program. Together with the various autism organisations that we network with, we are planning to open a network of therapeutic, educational, recreational and crisis centers to cater to the needs of the autistic population in that country. We are also teaching parents strategies which can be carried out cheaply by the parents in their own home. We are training parents in 'Professional Parenting' techniques based on the work of Dr. Bob Jones, Appalachian State University, USA. We are making recommendations to schools for classroom modifications and educational programs based on a combination of the best programs and resources available. For some, we will help the parents develop a unique home-schooling environment specific for their child (See the article Sam, a boy with Asperger Syndrome for a full account of one boy's success with such a program). We also assess and continue to monitor the health status, through lab testing where applicable, to identify common problems such as gut dysbiosis, heavy metal toxicity or metabolic differences that might call for additional nutritional supports or medical (allopathic, naturopathic or homeopathic) treatments.

A model of success
We would like the programs we are developing in Malaysia to be seen as a model of success in autism recovery programs, which can be implemented anywhere in the world. It is clear that there is an enormous gap in resources for families in crisis as schools and social services struggle to cope with the enormous influx of autistic children. Doctors and hospitals do not have specific training in the needs of autists, especially as the paradigm is changing from a psychological to a biological condition. Where do parents go for help? We believe the answer is in a center or network of centers and resources specifically for autists in every community, providing respite and emergency uptake, advice, crisis management, intensive therapeutic and recreational programs, training for teachers, doctors and therapists, education in diet and nutritional programs, and availability of specialized educational and recreational tools. The goal is not to take the children out of their schools and homes, but to give short, intensive programs that bring the children forward behaviorally and educationally, to get them prepared for re-integration into their communities. This is the model that we are developing now as a prototype in Malaysia. The Malaysian team are professional and include doctors, educators and founders of autism organizations dedicated to carrying through the program to success. The climate, modern infrastructure, enthusiasm and dedication of the autism professionals and parents, and an availability of quality foods unequaled anywhere in the world makes Malaysia a perfect location to continue our work.

We believe that the autism recovery program that we provide can be implemented anywhere in the world. Our program is not dependent on expensive products or supplements, or require the recruitment of professional therapists. Most of the people using the dietary approach are parents applying the program in their own home. We have worked with individual families, parent support groups, schools and residential facilities in countries around the world for the past 8 years, including India, Europe, Africa, North America and the Middle East. The program can be home-based or centered around a school or residential facility, or a 'model of excellence' community providing a range of services and programs. More information is available on our website and in our first book The Power of Exile: Autism - A Journey to Recovery.  A new book 'Autism Stories' is planned for later this year.

Sandra and Max Desorgher, directors of World Community Autism Program