World Community Autism Program
100 Khan Rd., Raisethorpe, Pietermaritzburg, 3201, Kwazulu-Natal SA
Phone: 033 397 1123
Mobile phone: 0722 536 158
Email: desorgher@sai.co.za
WCAP is seeking grant funding to fulfil our project commitments,
as outlined in a letter to the South
African Education Minister
Here are a few reasons why you may wish to support our work:
1. A brief description of how our
organization protects the environment.
World Community Autism Project has set aside money to purchase a piece
of land near to Albert Falls, an area of outstanding beauty in the Natal
Midlands area of Kwazulu Natal, South Africa. Although only 10 miles from
the city of Pietermaritzburg, the site is in a rural area characterized by
unemployment and poverty, an area that was formerly part of the Kwazulu homelands
under the apartheid system. At present, the only employment in the area
is in the local water supply industry at Albert Falls Dam.
We have chosen this area to locate our first Autism
Community Project for several reasons: The beauty and peacefulness of the
setting and the fact that the area is potentially an area that can develop
a tourism industry – there are campsites and picnic areas close by, and it
is on the ‘Albert Falls amble’ tourism route promoted by Kwazulu Natal tourist
board. The small village of Cramond has a police station, a shop and a school.
Other areas in the region, such as Howick, have already developed tourist
industries based on helping local people to develop crafts and skills which
can transform a community from one struggling at subsistence level into a
community which can grow and thrive.
Our plan is to transform a derelict but sound structure
set in several acres of land into a community center with many roles: our
principle goal is to provide therapeutic programs for autistic children,
based on our unique approach of dietary intervention coupled with complementary
therapies such as massage and ‘loving touch’ (hug therapy), applied behavioral
analysis, auditory integration and sensory integration, etc. We intend to
bring local women and men into the program to play a parental role to these
children, many of whom will be orphaned, or have been in care or institutional
settings for most of their lives. We will bring in local people to develop
craft programs – music, pottery, weaving and dyeing, basket-making, candle-making,
gardening which will function as therapeutic experience for the children,
as well as being a source of income for the craftspeople. We will have a
shop and a café on-site. We will employ and train local people in many
functions, as needed.
The environmental impact will be to transform a largely
impoverished area into a thriving and busy community center where people
will come from all over the world to visit our autism project – which will
be unique in its kind. Protection and enhancement of the environment will
be central to our work, and we will liaise with environment and wildlife organizations
to ensure that our impact on the environment is a positive one.
2. A brief description of how our organization
empowers people to meet their basic needs (such as food, shelter, economic
sufficiency).
Central to our plans for the project in Cramond is the empowerment
of local people.
Typically, people are living in temporary dwellings, ‘squatter camps’
and ‘township’ areas with minimal if any access to clean water, electricity,
transport, as is typical of much of rural Kwazulu-natal. Nevertheless, village
life can thrive, as we have seen in other areas nearby such as Sweetwater,
which have been transformed since the ending of apartheid into thriving communities
through local initiative.
Our organization believes that autism can best be tackled
at the community level. Autism has long been thought of as a lifelong disability
with no known treatment option. Recent advances and research are transforming
that view. Our contribution to autism research is into the understanding
that autism is a metabolic condition caused by immunogenetic interference
leading to the need for dietary changes, optimum nutritional status and co-occurring
therapies to bring about recovery. We have used this approach with autists
around the world, and can testify to improvements up to and including declassification
from autism in many individuals. But we have understood that, because of
the way the world economy works, if we were to begin our work in the wealthy
countries, it would take generations before autists in poor countries would
benefit. So we have decided to begin our work here, and demonstrate how a
community-based model can work cheaply and effectively, anywhere in the world.
The children will come to the center for 4-6 months and benefit from an intense
healing program. At the same time, we will prepare for their return to the
community, either by training their parents or parent surrogates, or potential
adoption families to take the children into their homes and communities. We
will invite people from around the world to come and train with us, then return
to their own countries and set up their own community-based programs modeled
on ours.
3. A brief description of how our organization
promotes cultural diversity (promotes intercultural tolerance and sensitivity,
and/or promotes survival of an endangered or threatened culture).
The population of Kwazulu-Natal is diverse. The majority of the population
are Zulu, and due to disenfranchisement in the past, this population are
impoverished, undereducated, and stunted in their feeling of self-worth. The
second largest population group are Asians - principally Indians who were
brought to South Africa as indentured laborers in the last century. This
is a well established community often working as professional people and
merchants. The white population is small to non-existent in the rural areas
of Kwazulu-Natal, although nearby Pietermaritzburg has a large white population,
largely of English decent.
Race relations are complex in post-apartheid South
Africa. Many of the more wealthy whites left the country, those that stayed
did so because they love the country and the people. Many left and then
returned when they found that life in the US or UK wasn’t what they had
expected. We arrived from the UK with some trepidation as to the reception
we would have as Europeans seeking to make a home in the new South Africa.
We have been overwhelmed by the generosity and warmth of the people from
all sections of the community. We rented a small home in the predominantly
Indian town of Raisethorpe, and feel fully at home here. We have traveled
and lived all over the world, including Europe, the middle-east, India and
America. For us, intercultural understanding is essential and it is also
central to the mission of WCAP. In this area of South Africa, raising the
hopes and ambitions of the local Zulu people and raising their self-esteem
is what is most needed.
4. Define briefly the problem or the need that
the Project or Program will help to solve.
The World Community Autism Program intends to initially undertake a single
research project which will provide significant dietary intervention for
a group of autistic children in a closed setting for a period of 4 months.
The project plans to include age and sex matched controls from nearby centers
and have the results of the project peer reviewed. Our aim is to set the
standard for treatment for this population. After the research is completed,
the center will continue to be used as an autism therapeutic community, resource
and educational center in rural Kwazulu-Natal, based on the results of the
research. The program is expected to result in significant and measurable
improvements for people with autism. It is our intent that this program and
protocol can be easily replicated globally thus reducing the burden which
autism places on the people who suffer from this condition, their families
and their communities.
5. Describe the proposed project or program and
the way it will help solve the problem or meet the need.
It is difficult and often impossible to undertake nutritional research
in the USA or the UK which involves children and/or has multiple components.
In those countries, scientific demands mean that studies must look at a
single element exclusively, e.g. gluten removal or cod-liver oil supplementation.
Our research tells us that a multiple dietary approach is needed, and the
lack of a comprehensive diet study to date means that autism is still considered
to be ‘untreatable’ by mainstream medicine, although hundreds of cases of
recovery have been documented using dietary intervention. We have seen people
with autism improve and even become symptom free using a combination of
dietary approaches which address the cause of autism instead of treating
the symptoms. We have applied these methods globally in our previous research
and recommendations for individuals from the USA, UK, India and Middle East
(Dubai). In South Africa, allopathic and traditional medicine are often
combined. Providing a combination of therapies for peer review is not uncommon
in this setting. Also, it is here where there is little understanding of
autism and much need for resources that we chose to provide the research
project and pilot program. We believe that we can make a difference in this
community in addition to the autism work, which will include providing literacy
training and job skills to local people in an area of underemployment and
underdevelopment. We also believe that if our program can succeed here in
a rural and impoverished community then it can be replicated anywhere in
the world.
6. List the services which the project/program will offer .
The initial research project will include some costly medical tests which
will not be included in the continuing program. These will include extensive
pre-diet and post-diet psychological evaluations, urine and stool testing.
These tests have, in past experience, provided documentation of the metabolic
changes which coincide with a decrease or alleviation of symptoms. The program
will offer also physiotherapy, gentle massage or ‘loving touch’ a locally
developed massage therapy program generally used for people with severe
and disabling conditions. The program will offer education at the level
of the participants including language, math, science, recreation and daily
living skills. Daily living skills will emphasize personal hygiene and opportunities
for gardening and cooking will be offered. Recreation activities will include
a jumping castle, swings, long walks, swimming and crafts such as beading,
basketry, wood working, metallurgy, painting and cloth dyeing provided by
local craftspeople. Literacy classes will be included for employees
and volunteers. The Cramond Center has ample space for developing a craft
center where local people can sell their wares and also the center crafts
made by the students can be displayed. We hope this will revive interest
in local art and also provide much needed income for local people. We plan
to have our craft classrooms designed as Zulu houses which should draw tourist
attention to our location. The classroom settings and lesson plans will
provide an opportunity for employees and volunteers to become familiar with
the classroom so that as they also learn and increase skills they can move
into the South African job market which is very much lacking in adequate
classroom staff. We foresee that the current government's efforts include
a move towards inclusion of the special needs population and this will result
in the need for trained support staff called also paraprofessionals and
academic specialists.
7. The number of people who will benefit by it,
their demographic distribution and density.
The number of people who are currently estimated to be diagnosed with autism
is 62.5 in 10,000 globally. The government estimated cost of lifetime care
for an individual with autism in a country such as the USA is $2,000,000.00.
There has been a steady rise in autism over the past 40 years and there
is every indication that this trend will continue. Habilitating any percentage
of this population so that they could become contributing members of societies
would improve their lives as well as the lives of those otherwise destined
to care for them. In South Africa as in many areas of the world there are
jobs that are not filled because the people lack job skills. We hope to
help reduce this gap by providing training which can be carried out from
the program at Cramond and used in fulfilling personal ambitions and which
will simultaneously benefit society as a whole. It is no secret that there
are teacher shortages in many areas of the world and advertising for teachers
to leave a country such as South Africa is currently underway with advertisements
from the USA and UK regularly placed in the local newspapers. In the USA
and the UK teacher vacancies which cannot be filled with accredited teachers
are often filled with paraprofessionals, a teacher might oversee 3 or more
classrooms and yet not actually be present in any classroom. In South Africa
and other areas of the world this void exists also but without the paraprofessional
staff to fill the void. We plan to encourage training for our employees
which will include classroom, literacy and experience. We anticipate communication
and co-operation from autism organizations which can help translate materials
into many languages.
8. The objectives sought.
Our primary goals and objectives
WCAP Goals
1. Redefine autism as a treatable condition.
2. Thoroughly develop a nutrition protocol for autism.
3. Incorporate therapy and therapy services which support healing.
4. Develop community based programs.
5. Build a support and communication network.
WCAP Objectives
1. Support the definition of autism as a treatable condition through research.
2. Teach and educate the community about autism and nutrition.
3. Teach and educate therapy and service integration.
4. Provide training to people in the community.
5. Enable autistic people to develop their potential
These cannot be realized until we have adequate funding to complete the
initial research project and proceed to providing the program at Cramond.
As soon as we are up and running we will invite people from everywhere to
produce a similar program and meet the needs of their autistic population.
9. Does the project/program overlap with or duplicate
other projects/programs?
The program/project does not duplicate other programs/projects. There have
been some brief single component diet studies which had variable results.
There are programs which provide single therapies such as auditory integration,
sensory integration, physiotherapy, speech therapy, movement therapy and
applied behavioral analysis. Most of these programs are expensive. Individually
the outcome is very variable. Any program combined with adequate dietary
intervention has a much greater chance of positive and measurable improvements.
Once completed we believe our research project will contribute substantially
to elucidating the cause of autism. Once the cause has been identified additional
products (supplements and pharmaceuticals) may be forthcoming. Some programs
and research projects attempt to address a single symptom of autism and
achieve intermittent and variable success. Understanding the cause of autism
could result in knowledge which could reduce the use of costly and invasive
therapies and at the same time could help to identify the few who might
be more likely to need these types of therapies.
10. Explain how the project will serve the Foundation's
goals in terms of its ability to help others and in terms of sharing technology,
know-how, and training.
People with autism often have little awareness of social, religious, political
or environmental concerns. Indeed many have very little self-help skills.
Their disability is not self-evident as most have a normal appearance. People
with autism often have no sense of danger and would easily walk in front
of a moving vehicle. They cannot be left alone and traveling with them often
becomes impossible. The burden and embarrassment to the family can be great
and often results in separation leaving the mothers alone to
try to care for the child. Divorce, separation of families
and social disgrace can lead to suicide, abandonment and
more pain and suffering in the community. Helping the people with autism,
their families, care givers, doctors and nutritionists to understand
and treat autism must be accomplished. We have had success where others
have failed and it is our duty to provide the knowledge we have gathered.
We believe we must strive to make this knowledge available to the most learned
doctors and also to the families including the most impoverished families
who suffer most. Our program and materials will be provided to those who
ask in as much detail and with as much training as we can afford to offer.
As the program is realized here in South Africa we anticipate training people
to go out and train others when they cannot come to us. We hope to purchase
additional property and provide onsite training for those who can come to
us. We anticipate traveling to areas where new programs are beginning and
offering our knowledge there.
11. INITIATORS Sarah Johnson, WCAP vice-president, is the adopted daughter of Sandra
Johnson Desorgher. At the age of five Sarah’s pre-placement evaluations
identified severe mental retardation (IQ 34), low muscle tone, severe hyperactivity,
autism, lack of speech. Sarah is now 18, and declassified from autism and
free of all aforementioned conditions after 7 years using dietary intervention. Sandra Desorgher, WCAP Deputy Director, has education including:
Bachelor of Science degree, Higher education in Food Science and Nutrition,
Behavioral Specialist Consultant, masters degree in ‘Teaching Family Model’,
training as ‘Professional Parent’ and foster parent with Appalachian State
University and additional certificates in medical terminology, nursing care,
CPR, medical first responder as well as experience in special needs foster
care, adoption, teaching, lecturing and authorship of books and articles.
From earliest childhood Sandra suffered with severe food reactions which led
to intensive study of foods, food chemistry and food allergy. When Sarah was
ten years old Sandra unlocked the mysteries of her own food intolerances which
had resulted in symptoms which were similar to those described for people
with autism, only intermittently. Finally medical science produced the literature
which Sandra needed to understand her own food intolerances. Further study
reveled that this same immune system pathway might be the active cause of
more severe autism. When the diet therapy was provided for Sarah at the age
of eleven her symptoms disappeared in a matter of weeks. Sara’s Story, adoption
of an autistic child was copyrighted in the USA in 1995 and sole ownership
of this treatment model belongs to Sandra Johnson Desorgher, however I do
not now nor have I ever placed a restriction on the use of this information
for the benefit of people with autism. Parents and physicians began to hear
about Sara’s diet, they asked for and received the information. Nearly every
child under the age of four became symptom free, usually in a few weeks.
Now the therapy has been provided for nearly 2000 individuals and we are
certain of it’s potential to improve the lives of people with autism. We
must therefore provide the medical community with the documentation required
to have this form of treatment become recognized. Max Desorgher, Executive Director, translator and editor oversees
most document presentation, has experience in Special Needs classrooms and
knowledge of many healing and therapeutic community models.
Together we have asked people of good reputation in the Pietermaritzburg
community to form our corporation: Sibusisu Dladla, President, is a minister
of the Apostolic Faith Mission and lecturer for the South African Evangelical
Association. Ms. Maharaj, WCAP treasurer, is Executive Director of a similar
organization which provides services for adults with disabilities. Ms. S.
Kraai is a social worker who works also locally with the SOS Children’s
Village and Ms. N Naidoo is a physiotherapist.
Board of Directors
Executive Director
Max Desorgher, 100 Khan Road, Raisethorpe, Pietermaritzburg, 3201,
Kwazulu-Natal, South Africa
Phone: 033 397 1123
Cell phone:0722 536 158
E-mail:desorgher@sai.co.za
Deputy Director
Sandra Desorgher, 100 Khan Road, Raisethorpe, Pietermaritzburg, 3201
Kwazulu-Natal, South Africa
Phone: 033 397 1123
Cell phone:0722 536 158
E-mail: desorgher@sai.co.za
President
Sibusiso Dladla, Box 100900, Scottsville, Pietermaritzburg, SA
E-mail: sdladla@herlewingsoord.co.za
Vice-President
Sarah E. Johnson, 100 Khan Road, Raisethorpe, Pietermaritzburg, 3201
Kwazulu-Natal, South Africa
