The International Consortium of Autism Institutes (ICAI) is a non-profit organization whose mission is to serve the needs of autism spectrum disorder (ASD) individuals. ICAI is primarily an advocacy group comprised of different autism and related disabilities centers from around the world. Its mission statement is to promote the free exchange of information regarding the health, wellness and educational needs of ASD individuals while simultaneously being respectful of their individual desires. The vision statement is to make a positive difference in the quality of life of ASD individuals and their loved ones now rather than later. Contrary to other organizations whose efforts are limited to governmental lobbying and/or fostering societal reforms ICAI actively engages its members on the day-to-day delivery of care for autistic individuals.
Our Mission is:
- to consolidate the keynote humanitarian and medical research and information technology resources on ASD and to promote, when necessary, an integrated approach to its treatment;
- to create a leading structure defining the strategy of social adaptation and medical rehabilitation of children and adults with ASD;
- to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis.
ASD is a developmental disability manifested by a different timeline in how children attain learning, language, and behavioural milestones. This condition begins during the developmental period (pregnancy) and primarily targets social and communication skills. Each autistic child is different and manifests abilities that range from gifted to severely impaired. The prevalence in the United States is estimated at 1 in 68 births and about 1% worldwide. Autism does not discriminate based on culture, geographical location or socio-economic status. Early diagnosis and intervention can improve some of the core symptoms of autism.
Autism provides for worldwide challenges and it is only through international collaboration that we may be able to garner the necessary resources to answer the needs of ASD individuals. ICAI believes that facilitating paradigmatic shifts within our society, government, neighbours and even some non-profit organizations, can modify some of the detrimental effects of ASD. In this regard we need the truthful dissemination of information and the institution of directives that promote research, follow the burden of the disease, and provide resolution in terms of conflicting studies/opinion/theories.
ICAI has as its main functions:
- Research – to assist in the organization of domestic and foreign scientific research in the field of ASD.
- Education – to promote academic training, professional retraining in the field of special pedagogy, psychology and psychophysiology of ASD. ICAI also promotes the provision of complex psychological, medical/pedagogical consultation, and diagnostic help to children and adults with ASD. Involved members of ICAI serve as launching pads for educational programs created by ICAI.
- the creation of new educational profiles of preparation of specialists for work with children and adults with ASD;
- development of new curricula for training specialists in the field of autism (bachelor, master, postgraduate education);
- elaborating and testing innovative educational and social technologies for work with children and adults with ASD;
- Coordination – to become the hub of a worldwide network of parents, professionals and researchers in the field of ASD, aiming to develop a research strategy to improve the methods of diagnosing, treating, and preventing autism, to design technologies of training, education and socialization of children and adults with autism.
- Information and publishing – to provide translations of key publications of the world’s leading experts in the field of autism, publication and dissemination of thematic monographs, current issues, original research articles, brief reports in autism to serve both the scientific community and public.
The initial aims of the IAI are to make patent a formal infrastructure, to host consultations on priority normative areas of action and to take stock on already existing resources. Consultations are made with members of the ICAI and with experts and advocates from all over the world. The ICAI acknowledges that education, research and treatment are of importance but by themselves may not meet the expectations of all ASD individuals. For many affected individuals the primary concern is how to overcome stigma and eliminate human rights violations in regards to health, educational and social opportunities. Fulfilling these expectations requires worldwide societal and political change.
Among key issues for our initial action proposal are: Why is a collective approach necessary? How best to implement a collective approach and reduce or eliminate any polarization? How to protect individual rights and maintain civil society among autism support societies? How best to build coalitions with public and private autism service providers? How to integrate information using different metrics?
The ICAI was originally established as a partnership between Autism-related Centres in Russia, China and the United States. These Centres had complementary talents and felt comfortable in sharing decision-making directives. There is, however, no limit to membership in this partnership and other recognized institutions, including those focusing on other neurodevelopmental disabilities, are welcome to join upon recommendation and majority vote of IAI members.
From left to right: Elena Chereneva, Manuel Casanova, Olga Bogdashina, and Xiaolo Li. I had the honor of being selected ICAI’s president for the next 2 years.
The organizing committee for fir ICAI’s opening ceremony and following conferences.
The opening ceremonies enjoyed the internet participation of people from England, Spain, Africa, France, Russia, Italy, and China. In this photo Theo Peters, from England, delivered a small congratulatory message to the participants.
The signing of ICAI was covered by both TV and the press. A video of the opening ceremonies (about 1:15 hours) was made available through the internet.
We had a song about autism (I’m Here) often called the “Autism Anthem” to close the ceremonies in an upbeat manner. The next morning we held lectures in an amphitheater in order to accommodate the large crowd of professionals and parents.
Is this a bit like the EU? Which originally started off as a goodwill cooperative thing rather than a project for a Fourth Reich governed by the Merkel regime.
“New scientific ideas never spring from a communal body, however organized, but rather from the head of an individually inspired researcher who struggles with his problems in lonely thought.” – Max Planck
Thanks for the comments. They are certainly food for thought.
To be fair it’s only my first thoughts. But not necessarily unsound for that! Of course autism researchers etc should collaborate internationally. But when things get too organised they can end up corrupted, as eventually happened to the Royal Society when it breached its original principle of not declaring an “official” view of anything, and now is just a pillar of the corporate establishment. Not least uncritically enthusing about the wonders of the peer review system with no regard to the widespread major criticisms thereof.
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Have now had time to read your actual article rather than just the title! It appears to be a worthwhile and potentially valuable initiative. Just two more negative thoughts for now. (I believe that positive thinking should include positive thinking about negatives!)
Firstly, autism is indisputably a very disputed area. There’s the Ari N’eeman (spelling?) factor you’ve already critiqued here. There are some who are convinced it’s all about “vaccine-damaged children”, and others who are convinced it is 101% not. There are certain quarters heavily into denial of the increase.
There is at least one autism centre in the UK which I consider to be engaging in outright charlanism (as fully detailed in my forthcoming book http://www.pseudoexpertise.com).
In this context I am pleased to see that the ICAI is composed of relatively sane and competent and honest people. (Though they are still using the unjustifiable “disorder” and “persons with” terminology, as also discussed in my book http://www.pseudoexpertise.com)
So for now it’s mainly a good thing potentially countering some of the bad things going on.
Secondly, the experience of all or most organisations for disabilities (medical “charities”) is that they eventually become the puppets of corrupting commercial interests (particularly big pharma). I think it’s fairly clear that that has already happened with some organisations relating to autism.
Hopefully it won’t be happening to the ICAI for the conceivable future, but it might be good to try to devise some system for defending against it.
ICAI will promote sharing information that can be applied to improving the quality of life of those in need. However, there are no plans for pharmacological clinical trials. The first corroborative project was in regards to TMS and we are perusing other leads in regards to education. TMS is the technique described by John Robison in his book Switched On.
Thank you for your comments, always appreciated.
Te felicito Manuel, ICAI es un verdadero lujo, respeto muchísimo a Olga, tengo un enorme admiración y respeto por Theo, todos se han comportado como “grandes” personas, sabiendo escuchar.. y en algún momento han “tomado” un tiempo para considerar mi opinión, como vos , con quien mas contacto tengo (virtual) y no conozco personalmente. Son mis MAESTROS, personas que sigo y de las que aprendo. mis mejores deseos para ICAI y a vuestra disposición. Saludos.
Muchisimas gracias. Es un honor ser considerado como tu maestro. Espero grandes cosas del ICAI, ya tenemos diferentes aspectos colaborativos en camino.