CALL: How to treat disabled children by Erich Kofmel

The United Nations Secretary-General's Special Envoy on Disability and Accessibility, a former chairperson of the UN Committee on the Rights of Persons with Disabilities, is developing a "'Campaign for the Good Treatment of Girls, Boys and Adolescents with Disabilities in the World', to contribute to the prevention of mistreatment of girls, boys and adolescents with disabilities".

They say: "The formulation of a 'Decalogue' [ten statements in easy language], which is the basic product of this campaign, has been the result of intense multidisciplinary work based on a focus group and interviews with children and adolescents with disabilities, and also with adults with disabilities, around to his [or her or their] childhood experiences.

"The decalogue expresses ideas in a simple, clear, direct and first-person way, so that it is understood by people of different ages and regions of the world. It is the children who speak to the community. Surely there are phrases that will seem 'obvious', but we have to reach everyone, 'leaving no one behind'.

"As a team, the Office of the Special Envoy of the SG-UN on Disability and Accessibility have opened a period of extensive consultations with civil society of persons with disabilities. Your contribution will be very valuable to reach the final version of the decalogue, which will be disseminated globally."

You can find the text of the draft decalogue below, in English and Spanish. Comments should be sent to Paula Arroyave Escaffi, Lawyer and Assistant of the Special Envoy: arroyavepaula@hotmail.com

The deadline for comments is 21 May.

Please submit comments on behalf of an (autistic-led) organization rather than individually. Comments you'd like Autistic Minority International to make should be sent to us as soon as possible: e.kofmel@autisticminority.org

Please don't forget to consult with autistic children and adolescents on this!

DECALOGUE OF GOOD TREATMENT
From Children and Adolescents with Disabilities to families,
caregivers, educators and society.
1) I exist and I am a person
2) I like that you love me and cuddle me
3) I like that you take care of me when I am in need, being attentive should something happens to me
4) I want you to accept me as I am, and to recognize my abilities and talents
5) I like that you listen to me, explain to me what is happening and consider my opinion
6) I like that you trust me and that you teach me
7) I need you to understand me and accompany me when I am upset or angry
8) I like that you include me
9) I want you to respect and take care of my body
10) It matters to me that you believe me

DECÁLOGO DEL BUEN TRATO
Desde los Niños, Niñas y Adolescentes con Discapacidad para las familias, cuidadores, educadores y sociedad.
1) Yo existo y soy persona
2) Me gusta que me quieras y me hagas cariño
3) Me gusta que me cuides cuando lo necesito, estando atento/a si algo me pasa
4) Quiero que me aceptes tal cual soy, y que reconozcas mis habilidades y talentos
5) Me gusta que me escuches, que me expliques lo que pasa y consideres mi opinión
6) Me gusta que confíes en mi y que me enseñes
7) Necesito que me comprendas y acompañes cuando estoy triste o enojado
8) Me gusta que me incluyas
9) Quiero que respetes y cuides mi cuerpo
10) Me importa que me creas

CONF: Autism and artificial intelligence by Erich Kofmel

The International Telecommunication Union, the specialized agency of the United Nations concerned with information and communication technologies, will be holding a conference on artificial intelligence, "AI for Good Global Summit 2018", from 15-17 May 2018, at ITU in Geneva, Switzerland.

https://www.itu.int/en/ITU-T/AI/2018/Pages/default.aspx

From the description: "The AI for Good series is the leading United Nations platform for dialogue on AI. [...] While the 2017 summit sparked the first ever inclusive global dialogue on beneficial AI, the action-oriented 2018 summit will focus on impactful AI solutions able to yield long-term benefits and help achieve the Sustainable Development Goals. 'Breakthrough teams' will demonstrate [...] new opportunities for AI to help achieve Universal Health Coverage [...]. Teams will propose impactful AI strategies able to be enacted in the near term, guided by an expert audience of mentors representing government, industry, academia and civil society. Strategies will be evaluated by the mentors according to their feasibility and scalability, potential to address truly global challenges, degree of supporting advocacy, and applicability to market failures beyond the scope of government and industry. The exercise will connect AI innovators with public and private-sector decision-makers, building collaboration to take promising strategies forward."

Of particular relevance to autistic persons is that the track on "AI and health" intends to "[i]dentify quick-wins areas and types of AI applications that hold high-potential impact on health outcomes and that are feasible and relatively simple to deploy". Under "Potential domains for AI quick-wins for Public Health", they list a number of workstreams, including "AI for primary care and service delivery", expecting that "Artificial Intelligence can help make certain types of diagnostics almost ubiquitous, sometimes in combination with off-the-shelf cameras or smartphones. Similar tools can help guide primary-care workers through treatments that they might otherwise not have been able [to] offer", among them "[s]ervices for [...] early childhood development disorders e.g., detection of [...] autism", "[p]re-diagnostics, self-assessment and remote screening ([...] mental health, [...] etc.)", and "AI-powered health consultations / telemedicine". Another workstream will discuss chatbots that "can help people with identifying [...] mental conditions".

If you are technologically well versed, please consider registering for this conference to ensure that the autistic perspective with regard to diagnostics and early detection is taken into consideration. Let us know if we can be of assistance: e.kofmel@autisticminority.org

Otherwise, the entire conference will also be webcast:

https://www.itu.int/en/ITU-T/AI/2018/Pages/webcast.aspx

Unfortunately, it is not clear if all tracks, such as "AI and health", and workstreams, i.e. "AI for primary care and service delivery", will be webcast simultaneously.

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.]

CONF: Human rights in mental health by Erich Kofmel

The Office of the United Nations High Commissioner for Human Rights (OHCHR), at the request of the UN Human Rights Council, will be organizing a consultation on "Identifying strategies to promote human rights in mental health", 14-15 May 2018, at Palais des Nations, Geneva, Switzerland.

http://www.ohchr.org/EN/Issues/Pages/MentalHealth.aspx

Rationale: "The Human Rights Council in its resolution 36/13 [...], recognised that persons with psychosocial disabilities, persons with mental health conditions, and mental health users face widespread discrimination, stigma, prejudice, violence, abuse, social exclusion and segregation, unlawful or arbitrary institutionalization, overmedicalization and treatment practices that fail to respect their autonomy, will and preferences. In order to address these human rights violations, the Council decided to hold a one day and a half consultation on mental health and human rights [...]

"The consultation will benefit from practitioners from all regions who will present their practices and share their experiences on how they are moving to a human rights-based approach to mental health.

"Participants to the consultation can participate from the floor [audience], presenting their own practices or sharing good practices. The meeting will be open to all interested participants."

Please let us know if you or someone from your organization or network would like to participate in the consultation on behalf of Autistic Minority International, or if you are aware of or involved in any "good practices" with regard to strengthening the human rights of autistic persons in mental health settings that you would like us to share. Contact: e.kofmel@autisticminority.org

Unfortunately, no funding for travel and/or accommodation is available.

[Update 25 April 2018: Registration is now open: https://reg.unog.ch/event/23746/

They ask for a letter from the registrant's organization. Please let us know if you need a letter from Autistic Minority International.]

Minority status for autistic persons by Erich Kofmel

Autistic Minority International struggles against the prevalent perception at the United Nations, based in a 1992 Declaration adopted by the UN General Assembly (http://www.ohchr.org/EN/ProfessionalInterest/Pages/Minorities.aspx), that minority status is limited to persons belonging to national or ethnic, religious, and linguistic minorities. Persons with disabilities are not commonly recognized as belonging to a protected minority, although deaf persons are viewed as a linguist minority due to their use of sign language. (Not generally acknowledged is that some autistic children and adults who do not speak also use sign language.)

Autistic Minority International wasn't the first organization to challenge this perception, though. In 2004, almost ten years before our organization was founded, a now defunct autistic-led group called Aspies For Freedom (AFF) published a manifesto entitled "Declaration from the autism community that they are a minority group", purportedly addressed to the United Nations.

http://www.prweb.com/releases/2004/11/prweb179444.htm

"A statement has officially been released from members of the autism community that could mean a big difference to their futures.

"If successful, and the United Nations declare that the autism community is a minority group, it could help to end discrimination for those who have this neurological difference.

"The statement reads thus-

"This is a declaration from the worldwide autism community that from here on we wish to be recognised as a minority group.

"We make this declaration to assert our existence, to be able to have a 'voice' on autism, rather than only that of experts and professionals in the field, to show how discrimination affects our lives, and that we want to direct a change from this type of bias against our natural differences, and the poor treatment that can ensue thereof.

"We recognise the autism community as those diagnosed with any condition on the autism spectrum, including autism, low-functioning and high-functioning, those with Asperger's syndrome, Fragile X, hyperlexia and PDD-NOS. We are aware that there are some people who have not yet received diagnosis, yet still recognise themselves as on the autism spectrum, and have the same elements on the diagnostic criteria.

"We recognise ourselves as a minority group based on the following factors-

"People in the autism community have their own way of using language and communication that is different from the general population, is often misunderstood and can cause a bias against us.

"Autism spectrum conditions are scientifically proven to be largely genetic and heritable. Many of those on the autism spectrum who have children bear children who are also on the spectrum, this needs to be recognised to avoid the frequency of criticism of autistic parents and discrimination that is suffered as to misunderstanding of the different needs, and communication between family members on the spectrum.

"People on the autism spectrum have a unique social network, this is primarily using communication with text on the internet. It is an invaluable community for many of us. There should be increased availability and recognition for this autism community online so that isolated members of the autism community can join and participate.

"People on the autism spectrum have our own cultural differences, unique habits, such as stimming and different perspectives than the norm. We feel it is essential that this is recognised as these 'traits' are the things that some children and adults are forced to stop by some harsh and intensive therapies. We should have the right to be ourselves, without the pressure to conform and change our cultural differences.

"We experience discrimination in various forms, often because of our different use of language and communication, habitual differences such as stimming, and lack of acknowledgment that autistic parents may have autistic children, and differences in the children are not due to poor parenting, but the innate differences of our minority group.

"The members of the autism community are facing an imminent threat of possible cure, in whatever fashion that may transpire, pre-natal testing for autism that could mean a form of eugenics, and total prevention from genetic counselling before conception. We have grave concerns of the possibilty of being forced to accept a cure, of parents being forced to cure children, and of there being great pressure put on parents on the spectrum to have genetic tests, or pre-natal screening. In the same sense that this would be entirely unacceptable to cure someone's skin colour, we feel that our differences need to be respected and our minority group to be protected.

"A specific case of how being afforded protection would help members of the community is the present treatment meted out to autistic children at the Judge Rotenberg Center in Boston in the USA. The children can be given electric shock 'therapy', this is from a contraption that can be worn for many years. This inhumane treatment is sickening to members of our community, this is just one such example of many.

"We mean for this statement to begin a process of official recognition by the United Nations that we are indeed a minority group, and worthy of protection from discrimination, inhumane treatment, and that our differences are valid in their own right and not something that needs to be cured."

In today's terms, "autism community" usually indicates non-autistic parents, professionals, and charities speaking about us, without us. We prefer the term "autistic community" to demarcate actually autistic persons speaking on their own behalf. We also reject labels like "low-functioning and high-functioning", as the same person can be both, in different areas and at different times and depending on whether or not they receive adequate support, such as access to assistive technology, augmentative and alternative communication.

Still, when deciding on the name for our organization, Autistic Minority International, we were inspired by this declaration. Sadly, despite the 2006 adoption of the UN Convention on the Rights of Persons with Disabilities (CRPD), much of it is as true, and as unresolved, as it was nearly fifteen years ago. We contacted the founders of AFF, but couldn't find out what UN body or entity the declaration had been sent to, in addition to being posted online, and what response they had received, if any.

CALL/CONF: Consult and involve DPOs by Erich Kofmel

The United Nations Committee on the Rights of Persons with Disabilities has published its Draft General Comment No. 7 on articles 4 (3) and 33 (3) of the Convention on the Rights of Persons with Disabilities (CRPD), namely States parties' responsibility to consult with and involve persons with disabilities, including women and girls and children with disabilities, in decision-making processes through their representative organizations.

You can read the Draft General Comment here:

http://www.ohchr.org/Documents/HRBodies/CRPD/Draft_GC7.docx

More information:

http://www.ohchr.org/EN/HRBodies/CRPD/Pages/CallSubmissionsDraftGC7.aspx

Rationale: "Throughout the process of drafting, negotiation and adoption of the Convention on the Rights of Persons with Disabilities, persons with disabilities and their representative organizations played a fundamental role. Their opinions, participation and effective involvement in all issues concerning the implementation of the Convention have also been the main feature in the implementation of the Convention and in the mandate and work of the Committee on the Rights of Persons with Disabilities.

"Articles 4.3 and 33.3 of the Convention establish the obligations of State parties concerning the effective consultation and involvement of persons with disabilities, including children and women with disabilities through their representative organizations in all decision-making processes concerning issues relating to persons with disabilities. In addition, these obligations entail the full involvement and participation of persons with disabilities through their representative organizations in the monitoring process of the Convention."

It is of course important to point out that, to the best of our knowledge, no autistic persons and no autistic-led organizations were involved in the negotiations of the CRPD. The CRPD was adopted by the UN General Assembly in 2006, Autistic Minority International was not founded until 2013. Disability constituencies such as ours face much higher hurdles than others in affirming our rights and needs because, unlike those that were present during negotiations, we are not explicitly mentioned in the CRPD.

They continue: "With this General Comment, the Committee intends to clarify, among others:

"1. The defining elements of 'representative organizations' of persons with disabilities and the distinction between organizations of persons with disabilities and other civil society organizations;

"2. The scope and criteria to fulfil the obligation to 'consult closely' and 'actively involve' persons with disabilities, through their representative organizations in decision-making processes;

"3. The type of decision-making processes concerning issues relating to persons with disabilities, including measures for the implementation of the Convention in the mainstream and disability-specific sectors;

"4. The scope of the involvement of persons with disabilities, through their representative organizations in the implementation and the monitoring of the Convention, in line with the Convention;

"5. General obligations of the State parties, such as to ensure accessibility to all facilities and procedures related to public decision-making; the principle of good faith in the development of consultations and involvement; the prohibition of discriminatory practices in consultation and participation processes, the principle of autonomy, and support, including through funding for facilitating participation processes.

"6. Concrete guidance on the implementation of articles 4.3 and 33.3 at the national level, including the direct engagement with representative organizations of women and girls with disabilities as well as representative organizations of children with disabilities, and the establishment of permanent consultation mechanisms with organizations of persons with disabilities."

The Committee now invites written input on Draft General Comment No. 7.

Written submissions in English, French, or Spanish of less than 5,300 words should be sent in Word format and with the subject line "Draft general comment on art. 4.3 and 33.3" to: cpedreros@ohchr.org and jaraya@ohchr.org

They ask you to please not include comments in the text of the Draft General Comment, but submit them in a separate document, including identification of the submitting entity; the paragraph number(s) to which the submission refers; concise comments; proposed text for amendment, if relevant; additional topic(s) to be included/left out of the Draft General Comment, with a short explanation and, if relevant, proposed text.

Deadline: 15 May 2018

All written submissions will be posted on the Committee's OHCHR webpage.

Autistic Minority International will be preparing a submission, and we call on autistic persons as well as local and national autistic self-advocacy organizations to please send any input you wish us to include as soon as possible to: e.kofmel@autisticminority.org

The Committee also announced that it will be holding a Half Day of General Discussion (DGD) on General Comment No. 7 during the annual Conference of States Parties (COSP) to the CRPD, taking place at UN Headquarters in New York from 12-14 June 2018.

Autistic persons have been historically excluded from participation in COSP due to unduly restrictive accreditation requirements, which are basically the same as for full formal consultative status with the United Nations through the UN Econcomic and Social Council (ECOSOC). Most autistic self-advocacy organizations simply do not meet the requirements for COSP accreditation. We are not accredited ourselves and neither is any other organization run by and for autistic persons.

We are also not a member of any umbrella body that could faciliate our participation. The International Disability Alliance (IDA), for instance, makes it impossible for us to join as any new global member organization would need to represent national affiliate organizations in at least thirty countries on five continents, or forty countries on three continents, and most national umbrella bodies exclude autistic-led organizations in favour of organizations of parents of autistic children. Such exclusionary practices and the resulting lack of true representation of actually autistic persons in decision-making on disability issues at all levels are the precise issues we will seek to address in our written submission on General Comment No. 7.

The situation seems particularly troubling as this is literally a DGD on the widest possible consultation with and participation and involvement of the diversity of representative organizations of persons with disabilities. There are many other groups like ours, as well as disabled persons' organizations (DPOs) from countries that make official registration with national authorities difficult or impossible (though it's an implied requirement for COSP accreditation as every country has the power to veto any request), that will be excluded from the DGD due to it being held at COSP rather than during a regular Committee session in Geneva.

We already contacted the Secretariat and Chairperson of the Committee to inquire whether they had any plans to facilitate the participation of DPOs that do not hold COSP accreditation. They replied thanking us for alerting them to the problem and promised to discuss ways of accommodating organizations that would not otherwise be able to attend COSP.

With the proviso that this has to be worked out by them, please let us know if you would like to participate in the DGD/COSP, representing Autistic Minority International and the autistic community. There will also be a Civil Society Forum on 11 June 2018. Unfortunately, we can't offer funding for travel or accommodation. Write to: e.kofmel@autisticminority.org

OHCHR study on autistic peer support by Erich Kofmel

The Office of the United Nations High Commissioner for Human Rights (OHCHR) prepares an annual thematic study on the rights of persons with disabilities for the spring session of the UN Human Rights Council, as well as occasional additional reports as requested by the HRC. Despite submissions by ourselves and national-level autistic self-advocacy organizations during the consultation phases for such studies and reports, staff at the OHCHR dealing with human rights and disability have not so far incorporated any suggestions we made, or at least not attributed them to and highlighted their importance specifically for autistic persons, with one notable exception.

The OHCHR "Thematic study on the right of persons with disabilities to live independently and be included in the community", submitted to the March 2015 session of the HRC, includes one reference that may be pertinent still to any autistic self-advocates seeking to influence their local or national governments:

"32. Submissions referred to a wide range of other community support services, often so-called centres for independent living. The support provided in such cases is geared towards information and advice, self and peer support, protection of rights and interests, shelters, housing services, training for independent living, supported decision-making and personal assistance. [...] Here, the concept of community should not be necessarily limited to a geographic and physical location: some persons with autism have found that support provided online may be more effective, in certain cases, than support received in person."

The footnote for this reads: "See the joint contribution by Autistic Minority International, Alliance Autiste (France) and Enthinderungsselbsthilfe von Autisten für Autisten (und Angehörige) (ESH) (Germany)." (http://www.ohchr.org/Documents/Issues/Disability/LiveIndependently/AutisticMinorityInternationalAllianceAutiste_ESH.doc)

Download link for the study:

http://www.ohchr.org/EN/HRBodies/HRC/RegularSessions/Session28/Documents/A_HRC_28_37_ENG.doc

Joint HRC statement on autism by Erich Kofmel

Last year, Paraguay made a statement on autism to the United Nations Human Rights Council on behalf of a large group of co-sponsoring countries. It is still unclear what prompted this statement:

"JOINT STATEMENT ON THE VISIBILITY AND ELIMINATION OF STIGMATIZATION AND DISCRIMINATION TOWARDS PERSONS ON THE AUTISM SPECTRUM

"GENERAL DEBATE ON ITEM 3 – JUNE 13, 2017

"Thank you, Mr. President.

"The Republic of Paraguay has the honour of taking the floor on behalf of 45 countries, including our own.

"Presently, the Autism Spectrum Disorders are affecting one (1) out of every one-hundred and sixty (160) children around the world, with a condition that persists throughout their lives, impairing their individual development and their participation in society.

"Persons with autism are often victims of stigmatization and discrimination and can become subjects to unfair limitations in the access to healthcare, education, participation in public affairs and labour opportunities. The visibility of these mentioned challenges must be addressed by this Council.

"Whilst some people are able to live independently, others are affected by severe disabilities. Severe cases of autism can become challenging for adequate healthcare and, in many occasions, carry high costs not only for the individuals, but also for their families and public health providers.

"The international community has been giving a growing importance the promotion of all human rights in the context of the human rights to health, and this Council ought to play a crucial role to its fulfilment, in accordance to the commitments encompassed in the 2030 Agenda and in cooperation with the World Health Organisation and other UN agencies, as well as the important role of civil society.

"Finally, Mr. President, allow us to call upon States to work together towards developing public initiatives directed to persons in the Autism Spectrum, with a human rights approach, in order to guarantee accessibility, non-discrimination, inclusion and other actions that will empower these individuals, particularly in cases where the required services and support are not available, limited or underdeveloped.

"Thank you, Mr. President."

The joint statement was co-sponsored by: Albania, Austria, Bangladesh, Bolivia, Bosnia and Herzegovina, Brazil, Bulgaria, Canada, Colombia, Croatia, Costa Rica, Cuba, Cyprus, Egypt, France, Germany, Georgia, Greece, Guatemala, Estonia, Honduras, Hungary, Israel, Italy, Japan, Korea (Republic of), Lithuania, Luxembourg, Malta, Montenegro, Morocco, Netherlands, Poland, Panama, Paraguay, Peru, Portugal, Romania, Slovenia, Spain, Sri Lanka, Tunisia, Turkey, United Kingdom, and Uruguay.

The only link we can find online is to a draft:

http://embassies.gov.il/UnGeneva/HumanRightsCouncil/RegularSessions/Documents/HRC35/HRC35_Item3_GD-Autism_Joint%20Statement.pdf

The statement itself does not seem very substantial. It speaks of "Autism Spectrum Disorders", which is WHO language, i.e. it starts from a medialized perspective on autism, rather than the social model of disability underlying the UN Convention on the Rights of Persons with Disabilities. From a disability rights perspective we would argue that it is not the condition that impairs our full and equal participation in society, but the social and attitudinal barriers we face. We would speak of "autism spectrum condition", rather than "disorder", and "autistic persons", not persons "with autism", as autism is an integral part of our identity, a lifelong neurological difference that is equally valid. And once again the focus is put on the financial burden to families and societies, which is largely caused by the WHO's insistence on early interventions and abusive behaviour modification treatments such as Applied Behaviour Analysis (ABA) that autistic self-advocates condemn as akin to torture. We welcome the reference to services and support that are not available, limited, or underdeveloped. We would however have stressed that this affects most of all autistic adults, for whom even in most developed countries next to no services or support are provided. All in all, the statement is pretty muddled, mainly because to the best of our knowledge no autistic-led or even autism-related organizations were consulted, and while it talks about some issues affecting autistic adults, we are not mentioned anywhere clearly. Most co-sponsors will likely have thought it's only about autistic children. If your government supported this statement, you may want to reach out to them and make sure they understand and embrace the autistic perspective in any future statements they wish to make or support at the United Nations. Autistic Minority International invites any governments and permanent missions to the UN to get in touch with us to discuss this further: e.kofmel@autisticminority.org