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Open letter calling on UNESCO to uphold UN CRPD principles

It was recently brought to the attention of Autism-Europe that the UNESCO is hosting a half-day conference titled “L’autisme: vers une évolution culturelle nécessaire” (“Autism: toward a necessary cultural evolution”), in the afternoon of 2 May 2018 at UNESCO in Paris, France. This event features approaches which have no scientific foundation, and speakers who have, in the past, propounded damaging theories including vaccines being the cause of autism.   

UNESCO, as a United Nations organisation, should uphold the UNCRPD principles and lead by example, notably by fostering access to reliable information to support the full realisation of disabled people’s right to education and health. 

The following open letter was sent to the Directorate General of the UNESCO:

              

  Brussels, 26/04/2018

To: Ms Audrey Azoulay, UNESCO Director-General

CC:
Ms Justine Sass, UNESCO chief of Education and gender equality
Exc. Monsieur Ibrahim Albalawi, Ambassadeur, Délégué permanent
Monsieur Daniel Janicot, Président de la Commission nationale française pour l’UNESCO (CNFU)
Madame Sophie Cluzel, Secrétaire d’État auprès du Premier ministre, chargée des Personnes handicapées
Mr Hegazi Idris and the Lebanese Autism Society (LAS), UNESCO Arab network for Autism

 

Re: Upholding UN CRPD principles and promoting the right to health and education

Dear Director General Azoulay,

It was recently brought to the attention of Autism-Europe that the Permanent Delegation of the Kingdom of Saudi Arabia to the United Nations Educational, Scientific and Cultural Organization is circulating an invitation to a half-day conference titled “L’autisme: vers une évolution culturelle nécessaire” (“Autism: toward a necessary cultural evolution”), to take place in the afternoon of 2 May 2018 at UNESCO in Paris, France.

We appreciate this effort to raise awareness of autism and share information on this issue. However, we were alerted to the fact that the conference’s programme features speakers that promote approaches to autism that are not evidence-based and promise to “cure” the condition, whereas there is currently no existing “cure” for autism[1].

Among the speakers is the former CEO and current Director of Global Education at the Autism Treatment Center of America. He promotes the “Son-Rise” therapy. There is almost no research to suggest that the Son-Rise Program is an effective intervention for children and young people on the autism spectrum. The “Son-rise” therapy has only been assessed through two very poor quality studies.[2]

In France, his center is active in collaboration with the association Optim’Autisme, which is also cooperating with Saudi Arabia in organising the UNESCO conference. Optim’Autisme appears to have been founded specifically with the aim of propagating Son-Rise in France. After the UNESCO conference, they will be holding a 5-day starter training course at the UNESCO restaurant.

Even more shockingly, other speakers on the programme also promote dangerous disproved theories. The event moderator and journalist supports the long-debunked theory[3] that autism is caused by vaccines[4]. As you may be aware, the fearmongering campaign linking vaccines and autism has resulted in measles cases soaring in Europe again. Last year, there were more than 21,000 cases and 35 deaths.

Both the moderator and another of the event’s speakers promote “dietary interventions” with no proven benefit for children on the autism spectrum.[5]

Autism-Europe considers that the programme of this event is not in line with UNESCO’s mission and strategic objectives, including aiming at “Attaining quality education for all and lifelong learning”, “Strengthening science, technology and innovation systems and policies”, as well as “Building inclusive knowledge societies”.

Autism-Europe advocates for the respect of the rights of autistic people as well as access to evidence-based information on autism for autistic people and their families, in line with the UN Convention on the Rights of People with Disabilities.

UNESCO, as a United Nations organisation, should uphold the UNCRPD principles and lead by example, notably by fostering access to reliable information to support the full realisation of disabled people’s right to education and health. 

We thus regret that UNESCO is host to an event that gives the floor to speakers who would not stand up to scientific scrutiny and disseminate potentially harmful information for autistic people and their families.

We call on UNESCO to have the highest level of scrutiny when hosting events and to request the amendment of the programme of this event or withdraw its support for it.

Thank you for your consideration, we look forward to hearing from you,

Your sincerely,

Signatories

 

[1] http://www.who.int/news-room/fact-sheets/detail/autism-spectrum-disorders
[2] Source : http://researchautism.net/interventions/23/son-rise-program-and-autism?print=1
[3] https://www.healthychildren.org/English/safety-prevention/immunizations/Pages/Vaccine-Studies-Examine-the-Evidence.aspx
[4] https://www.suretevaccins.com/2017/02/03/g%C3%A9n%C3%A9tique-et-r%C3%A9gression-post-vaccinale-%C3%A9tudes-interrogations-hypoth%C3%A8ses/
[5] http://www.autism.org.uk/get-involved/media-centre/position-statements/interventions.aspx