CONF: Developmental disabilities report by Erich Kofmel

We just came across information that the World Council of Churches (WCC) appears to be planning a Global Report on Developmental Disabilities. A technical meeting in preparation of this report will be held 26-27 June 2019 at the Ecumenical Centre of the WCC in Geneva, Switzerland.

The registration page is hosted by the United Nations Office at Geneva (UNOG) and the contact person is an administrative support staff member in the mental health department of the World Health Organization (WHO).

We requested registration to the meeting arguing that such a report should be informed by the perspectives of actually autistic persons and others with developmental disabilities. We encourage other autistic self-advocates to also register. Please let us know when you do so:

[Update 14 June 2019: Autistic Minority International’s registration request was rejected, through the UN registration system, presumably by the WHO. We have now reached out directly to a contact of ours at the WCC, who used to be in charge of their health programmes. We asked if they can tell us more about the planned report, its background, and motivation, if any autistic self-advocates and/or other persons with developmental disabilities will be involved (not just parents' organizations or charities run by non-autistic/non-disabled persons), who was invited to participate in that technical meeting on 26-27 June, what is the role of the WHO in this, and whether the report will be informed by the medical model of disability that views autism as a disease, disorder, and epidemic to be prevented, treated, cured, or eradicated, or the social model of disability that views disability as caused by societal attitudes, barriers, discrimination, and exclusion? We reminded them that in 2013, the WHO held a global autism consultation, jointly hosted with controversial US charity Autism Speaks, with not a single actually autistic person present, and that in 2014, the Vatican held an autism conference to which they also did not invite any autistic self-advocates as speakers (despite being contacted and urged to do so by Autistic Minority International half a year in advance), instead choosing to give a platform to WHO representatives, non-autistic medical "experts", scientists, and researchers, and allied parents and charities, again led by Autism Speaks, promoting a negative, biased, and prejudicial view of autism inside the Roman Catholic Church. We stressed that the prominent role of the WHO, which has accepted significant funding from and collaborates closely with Autism Speaks, in the preparation of this global report is highly alarming to us and that the World Council of Churches (a grouping of 350 Orthodox, Anglican, Baptist, Lutheran, Methodist, Reformed, United, and Independent member churches comprising 500 million Christians worldwide) seemed about to repeat the same mistakes others have made in the past – not involving and listening to actually autistic persons and others with developmental disabilities themselves.]

CALLs: Violent birth / cervical cancer by Erich Kofmel

Do you know autistic women who have experienced mistreatment or violence during reproductive health care, and in particular during childbirth? Or do you know about a link between autism and cervical cancer? The United Nations Special Rapporteur on violence against women, its causes and consequences and the World Health Organization (WHO) are currently inviting submissions on these two subjects. Please provide information to Autistic Minority International ( or urge groups run by and for autistic women to submit input themselves (they don't invite submissions by individuals).

Special Rapporteur on violence against women (a special procedure mandate appointed by the UN Human Rights Council):

Deadline: 17 May 2019

World Health Organization:

Deadline: 10 May 2019

In 2015, Monique Blakemore of Autism Women Matter provided us with some limited initial background on both issues (excerpt): "Autistic people are more likely to have been abused and for women, their past experiences can be a barrier to reproductive health assessments and treatments. Anecdoctal reports from autistic women indicate that they experience barriers to having regular smear tests due to inability to make and keep appointments (executive functioning), accessing diagnostic procedures (sensory response to equipment) and being examined in an intimate manner (PTSD from previous sexual abuse). Research needs to be conducted on the impact of women in relation to cervical cancer and accessing treatments and medicines.

"Their Sensory Processing Disorders (SPD) can impair the way they process sensory information and respond to it in a way that is inappropriate. Delay in processing pain, or displaying pain symptoms in a way non autistic people relate to, can be a barrier to receiving appropriate medical treatment and medicines including pain relief. Autistic women have reported their progression through childbirth was at the later stages of completion before being given assistance, including pain relief, as they outwardly did not present in a way maternity staff could relate to."

CALL: Quality mental health services by Erich Kofmel

Please share widely and provide input to the World Health Organization (for the call in French, Spanish, or Portuguese, see the respective questionnaires below):

"The WHO's QualityRights initiative ( is working to improve access to quality mental health services globally and to promote the human rights of people with mental health conditions and psychosocial, intellectual, and cognitive disabilities. As part of this initiative we are developing a good practice guidance document which will present information on community-based mental health services that promote human rights and the recovery approach.

"We are contacting you to help us identify people-centered services that you are aware of, that operate without coercion, and that respond to people’s needs by promoting autonomy, inclusion in the community, and the involvement of people with lived experience at all levels of decision-making. This should include services that support people experiencing acute crises but that do not resort to force, coercion, involuntary admission and treatment or the use of seclusion and restraints.

"By completing the questionnaire in the link at the bottom of this email, you will have the opportunity to submit up to five mental health services that you believe should be considered as a good practice. By participating, you can contribute to shaping the future of mental health services.

"Anybody who is involved in providing a service, has experience of using a service, or knows of a service is welcome to complete the questionnaire.

"Please note that we are not looking for services specifically focused on e-interventions, phone-based interventions, training programs, employment and housing programs, prevention programmes, or services focused on advocacy and/or system reform.

"Thank you in advance for your contribution before the closing date for the online consultation on 30th June 2019.

"You can access the consultation survey:

"For responses IN ENGLISH:

"For responses IN SPANISH:

"For responses IN FRENCH:

"For responses IN PORTUGUESE: "

CALL: AIMS-2-TRIALS consultative group by Erich Kofmel

Apply now for the consultative group of the Autism Innovative Medicine Studies-2-Trials (AIMS-2-TRIALS), the largest research grant ever given for neurodevelopmental conditions (115 million euros), funded by the European Union and controversial US charity Autism Speaks, among others. The international consortium is co-led by Roche, the Swiss pharmaceutical company developing a drug to "treat" the core symptoms/characteristics of autism. Those who can stand the medicalized view of autism that will be perpetuated throughout this may wish to apply to become an Autism Representative (A-Rep), to be involved from now until May 2023. Along with parents and carers, applications from actually autistic people are invited by the coordinators, UK charity Autistica and Cambridge University. They say applicants should be from the EU, but may also consider Switzerland, the UK, and possibly other non-EU countries (many funders and lead/partner organizations/universities are currently or after Brexit based outside the EU).

The steering committee selecting the A-Reps includes both Vice Presidents of parents' organization Autism-Europe (one of them one of the few autistic people in its structure) and is unlikely to be welcoming to critical independent autistic self-advocates. There is no information on who selected this steering committee, which "will also be a core part of the eventual group" of A-Reps. We do not expect any more transparency about the further selection process. Seeing how exclusionary the requirements for A-Reps are, we certainly have no trust in the steering committee that came up with these requirements.

Applicants have to be able to participate in telephone or video calls, which will exclude many actually autistic people (although the AIMS-2-TRIALS website also mentions the possibility of "an online forum depending on the preferences of members"). While saying that they "aim to ensure [...] diversity [...], including [...] people with different levels of language ability", all applicants will need to speak (not just write) English ("Show proficiency in spoken and written English"), which will exclude many more, and they will need to be able to make themselves heard over the voices of parents and carers (both metaphorically and literally).

They invite representatives of "membership organisations", but exclude groups organized informally, like much of the autistic self-advocacy movement, due to the requirement that "Those people [...] should represent organisations that are well-established [i.e. not organized primarily on Facebook or Twitter], have a significant [formal] membership (more than 20) and have clear processes for decision making [i.e. focus on form over substance]". And while these membership-based A-Reps are supposed to represent their communities (such as autistic people), they are not actually permitted to seek those people's input as "All documents, content of discussions and outcomes of [research] applications are confidential and must not be disseminated or discussed with others". A-Reps are also not allowed to freely publish their views, as "We have the right to check the material before it gets published and remove anything that would have a bad effect on our research efforts, break confidentiality, is not accurate [in their view], or goes against the aims of the project".

They offer payment, but only up to an hour in preparation of each meeting. Should you be autistic and require more time to prepare, it's on you. Some A-Reps may be invited to participate in physical meetings, but again, selection is entirely intransparent.

For some critical background on AIMS-2-TRIALS from an autistic perspective, you may want to read these posts by the Participatory Autism Research Collective:

Autism Representatives page on the AIMS-2-TRIALS website:

Recruitment form:

Role description:

Deadline: 25 March 2019

WAAD 2019: Assistive technologies by Erich Kofmel

The United Nations has announced the theme for this year's UN World Autism Awareness Day, 2 April 2019: "Assistive Technologies, Active Participation"

They write: "Autism awareness has grown worldwide in recent years. For the United Nations, the rights of persons with disabilities, including persons with autism, as enshrined in the Convention on the Rights of Persons with Disabilities (CRPD), are an integral part of its mandate.

"When world leaders adopted the 2030 Agenda for Sustainable Development in 2015, the international community reaffirmed its strong commitment to inclusive, accessible and sustainable development, and pledged that no one would be left behind. In this context, the participation of persons with autism as both agents and beneficiaries is essential for the realization of the Sustainable Development Goals (SDGs).

"For many people on the autism spectrum, access to affordable assistive technologies is a prerequisite to being able to exercise their basic human rights and participate fully in the life of their communities, and thereby contribute to the realization of the SDGs. Assistive technology can reduce or eliminate the barriers to their participation on an equal basis with others.

"The Convention on the Rights of Persons with Disabilities acknowledges the instrumental role of assistive technologies in enabling persons with disabilities to exercise their rights and freedoms. It obliges States that are party to the Convention to promote availability and use of such technologies at an affordable cost, to facilitate access to them, and to undertake or promote research and development into new such technologies.

"While technological advances are continuous, there are still major barriers to the use of assistive technologies, including high costs, lack of availability, lack of awareness of their potential, and a lack of training in their use. Available data indicates that, in several developing countries, more than 50% of the persons with disabilities who need assistive devices are not able to receive them.

"In September 2018, the UN Secretary-General launched a new Strategy on New Technologies, which aims to define how the United Nations system will support the use of these technologies to accelerate the achievement of the 2030 Sustainable Development Agenda. The Strategy is also intended to facilitate the alignment of these technologies with the values enshrined in the UN Charter and the Universal Declaration of Human Rights, and the norms and standards of International Law, including the CRPD and other human rights conventions. These values include equality and equity, inclusion and transparency. Design and use of new technologies, according to the Strategy, should be guided by a rights-based and ethical perspective.

"In the context of the Secretary-General's Strategy, the 2019 World Autism Awareness Day observance at UN Headquarters in New York will focus on leveraging the use of assistive technologies for persons with autism as a tool in removing the barriers to their full social, economic and political participation in society, and in promoting equality, equity and inclusion. Topics to be addressed through discussions with self-advocates and experts include:
- The Internet and digital communities: Leveling the playing field
- Independent living: Smart home technology and more
- Education and employment: Communication and executive functioning
- Telemedicine: Opening the doors to healthcare
- The right to be heard: Political participation and advocacy

"In 2008, The United Nations General Assembly unanimously declared 2 April as World Autism Awareness Day. The 2019 observance of the Day at UN Headquarters is organized by the UN Department of Global Communications and Department of Economic and Social Affairs, in close cooperation with persons with autism and their representative organizations."

While we can't speak for other autistic-led self-advocacy organizations, no one from the UN has reached out to seek the input of Autistic Minority International. We are also concerned about the ongoing distinction made between self-advocates and "experts". As actually autistic people, we are the real experts on our lives.

The programme hasn't been announced yet, but if you are planning to be in New York, you can already RSVP.

[Update 2 April 2019: The programme for the WAAD event at UN headquarters has finally been posted (was still not up two days ago):

It would appear that the last session has been turned over to pro-ABA speakers. Two speakers, including one autistic self-advocate, represent the Global Autism Project, a third speaker is an ABA practitioner from Kenya. The Global Autism Project uses language of autism acceptance, but in reality "recruits professionals in the field of behavior analysis to travel to partner sites and participate in training". When contacted about collaborating with them in 2018, Autistic Minority International informed them that we are strongly opposed to Applied Behaviour Analysis and similar forms of "therapies" aimed at normalization and behaviour modification, often experienced as abusive by autistic children and adults and disrespectful of our autistic identity, and therefore horrified at all these attempts at exporting ABA to developing countries, such as the Autism Speaks/WHO Global Autism Public Health Initiative or the Global Autism Project.

There's also an unfortunate post by the self-advocate invited to speak at the UN on the "semantics war" on the Global Autism Project website, regarding identity-first language. Non-autistic people need to listen to actually autistic persons and our own preferences, not that of others. It would be wrong if autistic people use "with autism" just to placate their audience (or "target" group) made up of parents and professionals. They need to change, not us.

Presumably, the event will be webcast live and/or archived on UN Web TV: ]

CALL: Rights of older autistic persons by Erich Kofmel

The United Nations Special Rapporteur on the rights of persons with disabilities is preparing a report on the rights of older persons with disabilities, to be submitted to the 74th session of the UN General Assembly in October 2019.

Concise submissions with input regarding older autistic persons, in English, French, or Spanish, should be sent in Word format to:

Deadline: 15 April 2019

Questionnaire in English:

Questionnaire in French:

Questionnaire in Spanish:

For the UN's World Autism Awareness Day 2017, Autistic Minority International organized a side event/thematic briefing for the expert members of the UN Committee on the Rights of Persons with Disabilities on "Ageing and Premature Death on the Autism Spectrum". Speakers included Cos Michael from the UK, Wenn Lawson from Australia, and Alanna Whitney from Canada. We will be making a written submission to the Special Rapporteur based on the ageing-related presentations made at that side event.

If you have any additional input you think we should include in our written submission to the Special Rapporteur, please send it as soon as possible to:

CALL: Autistic people killed by police by Erich Kofmel

The United Nations Special Rapporteur on extrajudicial, summary or arbitrary executions is preparing a report on "the impact of the use of lethal force by law enforcement officials on persons with psychosocial, intellectual or developmental disabilities", such as the killing of autistic people by police or excessive use of force against autistic prisoners.

The report will be submitted to the 41st session of the United Nations Human Rights Council (HRC) in June 2019. The Special Rapporteur is one of the so-called special procedures appointed by the HRC. The current mandate holder is Agnes Callamard of France.

Questionnaire and call for information on specific cases of killings/use of force:

From the rationale: "How police officers and law enforcement officials, as well as those operating in the administration of justice, including prison personnel, interact with persons with psychosocial, intellectual, or developmental (including autistic persons) disabilities is a topic of growing concern and international debate. Persons with such disabilities are entitled to specific measures of protection so as to ensure their effective enjoyment of the right to life on an equal basis with others. These shall include measures designed to prevent unwarranted use of force by law enforcement [...]. An emerging body of evidence points to disturbingly high numbers of law enforcement-inflicted fatalities involving persons with psychosocial, intellectual or developmental disabilities. [...] [I]ncidents related to the excessive use of force by law enforcement against persons with this kind of disabilities often remains invisible. [...] Limitations on data or inadequate data not only prevent developing awareness on the specific needs of people with psychosocial, intellectual or developmental disabilities when interacting with law enforcement and other state officials. They also make it difficult to inform policy making and legislation, establish accountability and oversight controls, designate responsibility and provide effective remedies for victims. The objective of the report is to broaden understanding of the scale of the problem with a view to identifying best practices, particularly in the prevention of fatalities associated with law enforcement intervention, and contributing to standard-setting efforts at the international level."

The information they are requesting is extremely wide-ranging and we can forsee that it will be overwhelming (and quite possibly triggering) to many autistic self-advocates, so it may be imperative that autistic people cooperate in providing information, for example at the country level.

Here is more information on this Special Rapporteur's mandate:

Concise and focused submissions, with the subject heading "Disabilities report 2019", should be sent to:

Deadline: 1 February 2019

Please send any information you think should be part of a submission by Autistic Minority International to us as soon as possible:


CALL: Empowering disabled children by Erich Kofmel

The United Nations Human Rights Council (HRC) decided to focus its 2019 annual full-day meeting on the rights of the child on the theme "Empowering children with disabilities for the enjoyment of their human rights, including through inclusive education". The HRC mandated the Office of the UN High Commissioner for Human Rights (OHCHR) to prepare a report on that theme, in consultation with all relevant stakeholders. You can find the questionnaire here:

Written submissions of no more than four pages are to be sent in accessible format (i.e. as Word document) to:

Deadline: 10 October 2018

All submissions will be posted on the OHCHR's website.