CONF: Curing autism at UNESCO / by Erich Kofmel

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. Simultaneous interpretation will be provided in English, French, and Arabic.

The conference isn't (yet) listed on the UNESCO events page, but here is a link to the invitation:

https://scontent-frx5-1.xx.fbcdn.net/v/t1.0-9/30743861_1798502423541596_6807055038494539776_n.jpg?_nc_cat=0&oh=705299fa54e94d745f207cd2509c2239&oe=5B4ED47B

Among the speakers is Raun K. Kaufman, former CEO and current Director of Global Education of the Autism Treatment Center of America. According to the the Center's website, he is "himself fully cured from Autism". He opposes the American Academy of Pediatrics' "continued position that Autism is incurable. [...] Since there is no way to see the future, the only ethical choice we have is to treat every child as if he or she can be cured and give all children a chance.' As a child, Mr. Kaufman was diagnosed with severe autism and recommended for lifelong institutionalization. Instead, his parents developed The Son-Rise Program, which enabled their son’s complete cure from Autism. Now an international speaker and Ivy League graduate, Mr. Kaufman bears no traces of his former condition." (http://www.autismtreatmentcenter.org/contents/learn_more/press_release-nov19.php)

While Son-Rise as a relationship-based form of "therapy" seems less abusive than for example Applied Behaviour Analysis (ABA), it is such false claims and outlandish rhetoric that help them sell books and costly training and programmes: "We can help you to bring your child as far across the bridge from Autism to recovery as possible. For some, this means complete recovery." (http://www.autismtreatmentcenter.org/contents/other_sections/index.php) "The Son-Rise Program is the only program that: [...] Helps parents cure their children in some cases" (http://www.autismtreatmentcenter.org/contents/learn_more/media_advisory-march08b.php) "Nicoleta found the symptoms of autism that her son exhibited to  be devastating. She spent years looking for autism support networks and autism treatment programs for her son and was about to give up when she discovered the book 'Son-Rise: The Miracle Continues' – a potential cure for autism." (http://www.autismtreatmentcenter.org/contents/programs_and_services/maximum_impact_program.php)

To be clear: there is no "recovery" from autism! There is no "cure", and autistic people don't need to be cured or recovered!

In France, Kaufman's Center is active in collaboration with the association Optim'Autisme, which also cooperates with Saudi Arabia in organizing the UNESCO conference. Optim'Autisme writes: "Il existe à l’étranger des méthodes et programmes qui permettent de dépasser l’autisme, ou d’en sortir complètement." ("There are methods and programmes abroad that allow you to overcome autism, or to get out of it completely.") (http://www.optimautisme.com/index.php/association) Optim'Autisme appears to have been founded specifically with the aim to propagate Son-Rise in France. After the UNESCO conference, they will be holding a 5-day starter training at the UNESCO restaurant (http://www.optimautisme.com/index.php/approches/le-son-rise-program/evenements/87-formations-au-son-rise-program-2018/son-rise-program-start-up-4-8-mai-2018/67-son-rise-program-start-up-4-8-mai-2018).

Even worse, among the conference speakers are also two mothers who claim that their children have "recovered" from autism. One of them, Senta Depuydt from Belgium, supports the disproven theory that autism is caused by vaccines: "Senta's son was developing perfectly normally until the age of 18 months when, after a regular vaccination, he started to show mental regression and was diagnosed with Autism. And, once again, the parents’ proactivity and hope for positive results were the essential conditions for their child’s recovery! Following a holistic biomedical approach based on nutrition, supplementation and detoxification programs, Senta’s son achieved enormous progress and, ultimately, complete recovery. [...] I was amazed by this woman’s determination to help other parents by sharing her own experience and by organising a whole Vaccine Safety Project in Europe." (https://liverighteu.wordpress.com/2017/04/13/are-you-aware-that-autism-recovery-is-possible/) Billed by the conference organizers as a journalist, one of her articles is "Génétique et régression 'post-vaccinale': études, interrogations, hypothèses" ("Genetics and 'post-vaccination' regression: studies, questions, hypotheses") (https://www.suretevaccins.com/2017/02/03/g%C3%A9n%C3%A9tique-et-r%C3%A9gression-post-vaccinale-%C3%A9tudes-interrogations-hypoth%C3%A8ses/).

The little-known Australian speaker, Verity Eason, commented in 2014 on the website "Age of Autism: Daily Web Newspaper of the Autism Epidemic[!]" - which shows just where she gets her information on autism from - that "Enhansa [a dietary supplement], put simply, was the first and by far the best of interventions for our son with ASD [autism spectrum "disorder"] [...]. We have been using it for 2 and a half years, it completely changed the ball-game for us. [...] the reality is that our son becomes ill again if he goes without Enhansa for more than 2-3 weeks. Today, he's very close to maintained recovery from ASD [...]. Thankyou [...], for helping us bring back our son's health." (http://www.ageofautism.com/2014/09/win-enhansa-curcumin-supplement-from-lee-silsby.html)

As the "professionals" on the panel are unlikely to contradict these "recovery" and "cure" narratives, it will fall to Hugo Horiot, a prominent and highly regarded autistic self-advocate from France, to set the record straight. We believe that he wasn't aware of what he signed up for when accepting to speak at this conference. Still, the presence of even more actually autistic persons in the audience will be essential to counter any misinformation spread about us. Please inform your contacts in Paris and beyond about the true nature and intent of this conference. Make sure that UNESCO, the UN specialized agency for education and science, does not become a breeding ground of pseudo-science, quackery, and uneducated nonsense about autism.

RSVP by phoning +33 (0)1 45 68 43 06 or send an e-mail to: dl.saudi-arabia@unesco-delegations.org

Print out the invitation and present it to gain entry. Seating is limited.

[Update 23 April 2018: The actually autistic speaker, Hugo Horiot, has informed the organizers of his withdrawal from the conference.]

[Update 25 April 2018: Justine Sass, the UNESCO speaker, has informed us of her withdrawal from the conference. It is not clear if UNESCO as an organization has withdrawn its support. We may not be able to prevent the conference from going ahead, as Saudi Arabia, as a UNESCO member state, has the right to hold events on UNESCO premises.]

[Update 30 April 2018: It has come to our attention that Alexandra Oakley, the founder of Optim'Autisme, works at UNESCO, in the Conferences and Cultural Events Management Section of all places. This conference clearly violates UNESCO rules and regulations which state: "Conferences and cultural events taking place on UNESCO premises are expected to be in harmony with UNESCO's programmes and objectives. They should not be detrimental to the Organization's image or reputation [...]. Commercial, financial or advertising activities are prohibited" (http://www.unesco.org/new/en/member-states/conferences-meetings-and-cultural-events/). The conference is designed to advertise programmes of the Autism Treatment Center of America, promoted in France by Alexandra Oakley's Optim'Autisme association. Their 5-day Son-Rise training in the UNESCO restaurant from 4-8 May is sold for 1,200 euros per participant! The French-language version of the website of the Center is titled: "L'Autisme Ne Doit Pas Etre Une Condamnation A Perpétuité" ("Autism does not have to be a condemnation for life") (https://www.autismtreatmentcenter.org/contents/languages/french_version.php). As actually autistic persons, we do not feel condemned. We feel outraged by such incendiary language depicting autistic people in the worst possible light for financial gain and increasing pressure on us to "normalize" and hide our autism (there is no "cure", only masking). It is unlikely that many autistic persons will attend the conference. Someone said it would be like being the only black person in a room full of white supremacists.]

[Update 3 May 2018: Autism-Europe, the network of 90 organizations of parents of autistic children and other autism-related organizations from 38 European countries, with non-European member organizations based in Saudi Arabia, Kuwait, and Morocco, posted an open letter on its website on the day of the conference, which they had sent to the UNESCO Director-General and other addressees on 26 April 2018:

English: http://www.autismeurope.org/blog/2018/05/02/26531/

French: http://www.autismeurope.org/fr/blog/2018/05/02/lettre-ouverte-appelant-lunesco-a-promouvoir-les-principes-de-la-cnudph/

Excerpt: "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. [...] 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. [...] Even more shockingly, other speakers on the programme also promote dangerous disproved theories. [...] 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. [...] Autism-Europe considers that the programme of this event is not in line with UNESCO's mission and strategic objectives [...]. 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."

It is unclear whether Autism-Europe has received a response from UNESCO. In any event, the conference went ahead yesterday.

While the text of the open letter is evidently based on and includes multiple passages that were copied word for word from the post on our website (above), we have not been contacted by Autism-Europe about the conference or their concerns. We could therefore not let them know in time when we found out that the founder of Optim'Autisme is employed at UNESCO, which adds a whole other layer of lack of oversight and potential malfeasance. Even weirder, the Autism-Europe open letter was also signed by Autisme France, the national parents' organization, and two other French autism organizations, but no autistic-led self-advocacy organization was apparently invited to sign. Needless to say that the source of the information, Autistic Minority International, was neither mentioned in the Autism-Europe letter nor were we invited to sign it. In a letter with five footnotes, based on the text on our website, we feel we would have warranted acknowledgement at least by way of a footnote, too.]