UN on autism and coronavirus

This year's message by the United Nations Secretary-General, António Guterres, on occasion of the UN's World Autism Awareness Day (2 April) focusses on the rights of autistic persons during the current pandemic and the need for local, regional, and national authorities to consult with autistic-led organizations regarding disability-inclusive coronavirus (COVID-19) responses.

https://www.un.org/en/observances/autism-day

Full text: "On World Autism Awareness Day, we recognize and celebrate the rights of persons with autism. This year's observance takes place in the midst of a public health crisis unlike any other in our lifetimes – a crisis that places persons with autism at disproportionate risk as a result of the coronavirus and its impact on society. 

"Persons with autism have the right to self-determination, independence and autonomy, as well as the right to education and employment on an equal basis with others. But the breakdown of vital support systems and networks as a result of COVID-19 exacerbates the obstacles that persons with autism face in exercising these rights. We must ensure that a prolonged disruption caused by the emergency does not result in rollbacks of the rights that persons with autism and their representative organizations have worked so hard to advance.

"Universal human rights, including the rights of persons with disabilities, must not be infringed upon in the time of a pandemic. Governments have a responsibility to ensure that their response includes persons with autism. Persons with autism should never face discrimination when seeking medical care. They must continue to have access to the support systems required to remain in their homes and communities through times of crisis, instead of facing the prospect of forced institutionalization.

"We all have a role to play in ensuring that the needs of people who are disproportionately impacted by COVID-19 are met during this difficult period. Information about precautionary measures must be provided in accessible formats. We must also recognize that when schools employ online teaching, students with non-standard ways of learning may be at a disadvantage. The same applies to the workplace and working remotely. Even in these unpredictable times, we must commit to consulting persons with disabilities and their representative organizations, and ensuring that our non-traditional ways of working, learning, and engaging with each other, as well as our global response to the coronavirus, are inclusive of and accessible to all people, including persons with autism.

"The rights of persons with autism must be taken into account in the formulation of all responses to the COVID-19 virus. On World Autism Awareness Day, let us stand together, support each other and show solidarity with persons with autism."

It is unfortunate that the UN still insists on using "persons with autism", rather than "autistic persons", preferred by most actually autistic adults. The Secretary-General's message also does not sufficiently take into account that the coronavirus highlights and intensifies the different ways in which persons with disabilities, including autistic persons, are still left behind and excluded. For some autistic people (and others), 'social distancing' from their caregivers and personal assistants is simply not an option. On the other hand, for many autistic adults (and older persons) 'social distancing', isolation, and loneliness may be nothing new, it's what they experience every day. Anecdotal reports suggest that autistic children, who may struggle with physically attending a mainstream school due to anxiety, sensory overload, or bullying, cope very well with remote schooling. Indeed, voluntary online options for autistic students (such as following classes per webcam, at least part of the time) have been advocated by autistic-led organizations for many years as a way to advance inclusive education. Then again, those of us who are in psychiatric institutions or care facilities are at a heightened risk of abuse, abandonment, and neglect when visitors are prohibited. The Secretary-General's message fails to specify how states will guarantee our rights and survival and prevent disability-related discrimination in times of crisis. What concrete measures are states, the World Health Organization, and the United Nations taking to ensure that all coronavirus responses are disability-inclusive, inclusive of all disability constituencies, and of autistic persons in their diversity?

We recommend you also read the coronavirus statement by the UN Special Rapporteur on the rights of persons with disabilities of 17 March 2020, "COVID-19: Who is protecting the people with disabilities?":

https://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=25725&LangID=E

On 26 March 2020, the World Health Organization released a briefing to key stakeholders, including persons with disabilities, their families and caregivers, governments, health workers, service providers, and the wider community, on "Disability considerations during the COVID-19 outbreak":

https://www.who.int/who-documents-detail/disability-considerations-during-the-covid-19-outbreak

On 31 March 2020, the International Disability Alliance (IDA) issued an open letter to the Director-General of the WHO calling on him to take immediate action against discrimination of persons with disabilities in accessing emergency services, such as denial of treatment due to "dependency":

http://www.internationaldisabilityalliance.org/sites/default/files/ida_letter_to_who_march_31_2020.pdf

"Joint Statement: Persons with Disabilities and COVID-19" by the Chair of the United Nations Committee on the Rights of Persons with Disabilities, on behalf of the Committee, and the Special Envoy of the UN Secretary-General on Disability and Accessibility, posted on 1 April 2020:

https://www.un.org/development/desa/disabilities/wp-content/uploads/sites/15/2020/04/Joint_Statement_Persons_with_Disabilities_COVID19.pdf

The United Nations Children's Fund (UNICEF) also published a guidance note, "COVID-19 response: Considerations for Children and Adults with Disabilities":

https://www.unicef.org/disabilities/files/COVID-19_response_considerations_for_people_with_disabilities_190320.pdf

European Disability Forum (EDF), "Open letter to leaders at the EU and in EU countries: COVID-19 – Disability inclusive response", dated 13 March 2020:

http://www.edf-feph.org/newsroom/news/open-letter-leaders-eu-and-eu-countries-covid-19-disability-inclusive-response

Joint statement by regional and international organizations of persons with psychosocial disabilities, such as the World Network of Users and Survivors of Psychiatry (WNUSP), of 26 March 2020, making recommendations to states on "COVID-19 and persons with psychosocial disabilities", including those who are institutionalized:

https://dk-media.s3.amazonaws.com/AA/AG/chrusp-biz/downloads/357738/COVID19-and-persons-with-psychosocial-disabilities-final_version.pdf

[Update 15 April 2020: The 5 key points of the International Labour Organization (ILO) regarding persons with disabilities in COVID-19 responses in the world of work are now available in eight languages (one page, dated 8 April 2020, originally released in late March):

https://www.ilo.org/global/topics/disability-and-work/WCMS_741287/lang--en/index.htm ]

[Update 17 April 2020: Statement by the Council of Europe's Commissioner for Human Rights of 2 April 2020 demanding "Persons with disabilities must not be left behind in the response to the COVID-19 pandemic":

https://www.coe.int/en/web/commissioner/-/persons-with-disabilities-must-not-be-left-behind-in-the-response-to-the-covid-19-pandemic ]

[Update 27 April 2020: "Joint Statement: Mental Health of Persons with Disabilities during the COVID-19 pandemic" by the Special Envoy of the UN Secretary-General on Disability and Accessibility and the WHO's Special Envoy on COVID-19 for Latin America and the Caribbean, published 15 April 2020:

https://www.un.org/development/desa/disabilities/wp-content/uploads/sites/15/2020/04/Salud-Mental-Covid19-y-personas-con-discapacidad-ENGapril15.pdf

"Joint Statement: The right to life of persons with disabilities and older persons infected by Covid-19" by the Special Envoy of the UN Secretary-General on Disability and Accessibility and the UN Independent Expert on the enjoyment of all human rights by older persons of 20 April 2020:

https://www.un.org/development/desa/disabilities/wp-content/uploads/sites/15/2020/04/Version2-Decl-Estandar-Bioet-Dpcd-ENabril20.pdf

Joint statement "COVID-19 crisis: People living in institutions must not be written off" by the European Expert Group on the Transition from Institutional to Community-based Care (EEG), a broad coalition of civil society groups and UN agencies, dated 24 April 2020:

https://deinstitutionalisation.com/2020/04/24/covid-19-crisis-people-living-in-institutions-must-not-be-written-off/ ]

[Update 29 April 2020: European Disability Forum (EDF), "Residential institutions are becoming hotbeds of infection and abuse – governments need to act now", posted on 31 March 2020:

http://edf-feph.org/newsroom/news/residential-institutions-are-becoming-hotbeds-infection-and-abuse-governments-need-act

United Nations Economic and Social Commission for Asia and the Pacific (UNESCAP), undated policy brief on "Ensuring disability rights and inclusion in the response to COVID-19":

https://www.unescap.org/sites/default/files/ESCAP_Policy_Brief%20%28COVID-19_and_PWDs%29.pdf

United Nations Partnership on the Rights of Persons with Disabilities (UNPRPD), UN Special Rapporteur on the rights of persons with disabilities, and International Disability Alliance (IDA), "Disability inclusive social protection response to COVID-19" (undated):

https://www.unescap.org/sites/default/files/ESCAP_Policy_Brief%20%28COVID-19_and_PWDs%29.pdf

Campaign by IDA and the International Disability and Development Consortium (IDDC) to make COVID-19 response information accessible to persons with disabilities, commenced on 27 April 2020 with letters to the UN and WHO regarding their public briefings and communication, asking them to set an example for states:

http://www.internationaldisabilityalliance.org/acessibility-campaign ]

[Update 30 April 2020: The Office of the United Nations High Commissioner for Human Rights (OHCHR) has published an 11-page guidance note on "COVID-19 and the rights of persons with disabilities", dated 29 April 2020:

https://www.ohchr.org/Documents/Issues/Disability/COVID-19_and_The_Rights_of_Persons_with_Disabilities.pdf

In support, on 30 April 2020, the UN High Commissioner for Human Rights released a statement titled "COVID-19: Bachelet urges States to take extra steps to include people with disabilities":

https://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=25847&LangID=E ]

[Update 8 May 2020: UN Secretary-General's "Policy Brief: A Disability-Inclusive Response to COVID-19", published on 6 May 2020:

https://www.un.org/sites/un2.un.org/files/sg_policy_brief_on_persons_with_disabilities_final.pdf

SG's accompanying message and video and an easy-to-read version:

https://www.un.org/en/coronavirus/we-have-unique-opportunity-design-and-implement-more-inclusive-and-accessible-societies ]

[Update 22 May 2020: 138 UN member states and observers, including the European Union, responded to the UN Secretary-General's policy brief with a joint letter titled "Disability-inclusive response to COVID-19 – Towards a better future for all", posted on 18 May 2020:

https://onu.delegfrance.org/Disability-inclusive-response-to-COVID-19-Towards-a-better-future-for-all

Also on 18 May 2020, the European Commission followed this up with "United Nations: Joint statement by High Representative Borrell, Vice-President Jourová and Commissioner Dalli on the rights of persons with disabilities”:

https://ec.europa.eu/commission/presscorner/detail/en/statement_20_903 ]

[Update 25 May 2020: Joint statement “Women and girls with disabilities and older women in relation to the COVID-19 pandemic” by the Special Envoy of the UN Secretary-General on Disability and Accessibility and the UN Independent Expert on the enjoyment of all human rights by older persons of 28 April 2020:

https://www.un.org/development/desa/disabilities/wp-content/uploads/sites/15/2020/04/covid19-joint-statement-women-girls-disabilities-olderwomen-covid19.pdf

Joint statement "Local governments and persons with disabilities in relation to Covid-19" by the Special Envoy of the UN Secretary-General on Disability and Accessibility and the Coordinator of the Cities For All Global Compact on Inclusive and Accessible Cities (Cities4All) of 5 May 2020:

https://www.un.org/development/desa/disabilities/wp-content/uploads/sites/15/2020/05/JointStatement-Local-Governments-PWD-Covid19.pdf ]

[Update 8 June 2020: Policy Brief "COVID-19 and the World of Work: Ensuring the inclusion of persons with disabilities at all stages of the response" of the International Labour Organization (ILO), published on 4 June 2020:

https://www.ilo.org/wcmsp5/groups/public/---ed_emp/---ifp_skills/documents/publication/wcms_746909.pdf ]

[Update 10 June 2020: "Statement on COVID-19 and the human rights of persons with disabilities" by the United Nations Committee on the Rights of Persons with Disabilities, released 9 June 2020:

https://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=25942&LangID=E ]

[Update 24 June 2020: Statement by the UN Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health of 23 June 2020, "COVID-19 has exacerbated the historical neglect of dignified mental health care, especially for those in institutions":

https://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=25988&LangID=E ]

CONF: Developmental disabilities report

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.

https://reg.unog.ch/event/30324/

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: e.kofmel@autisticminority.org

[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

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 (geneva@autisticminority.org) 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):

https://www.ohchr.org/EN/Issues/Women/SRWomen/Pages/Mistreatment.aspx

Deadline: 17 May 2019

World Health Organization:

https://www.who.int/cancer/cervical-cancer/cervical-cancer-elimination-strategy

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

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 (https://www.who.int/mental_health/policy/quality_rights/en/) 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: https://extranet.who.int/dataform/237749?lang=en

"For responses IN SPANISH: https://extranet.who.int/dataform/237749?lang=es

"For responses IN FRENCH: https://extranet.who.int/dataform/237749?lang=fr

"For responses IN PORTUGUESE: https://extranet.who.int/dataform/237749?lang=pt "

CALL: AIMS-2-TRIALS consultative group

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:

https://participatoryautismresearch.wordpress.com/2018/07/23/some-questions-about-aims-2/

https://participatoryautismresearch.wordpress.com/2018/09/18/autism-innovative-medicine-studies-2-trials-project-faq/

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

https://www.aims-2-trials.eu/about-us/team/autism-representatives/

Recruitment form:

https://www.smartsurvey.co.uk/s/A-Reps/

Role description:

https://autistica.sharepoint.com/Shared%20Documents/Forms/AllItems.aspx?id=%2FShared%20Documents%2FGrant%20Management%2FPartnership%2FAIMS2TRIALS%2FA%2DReps%2FRole%20description%20A%2DReps%20final%2Epdf&parent=%2FShared%20Documents%2FGrant%20Management%2FPartnership%2FAIMS2TRIALS%2FA%2DReps&p=true

Deadline: 25 March 2019

WAAD 2019: Assistive technologies

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

http://www.un.org/en/events/autismday/

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):

https://www.un.org/en/events/autismday/assets/pdf/2019%20WAAD%20Programme.pdf

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: http://webtv.un.org/ ]

CALL: Rights of older autistic persons

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: sr.disability@ohchr.org

Deadline: 15 April 2019

https://www.ohchr.org/EN/Issues/Disability/SRDisabilities/Pages/SupportingTheAutonomyOlderPersons.aspx?fbclid=IwAR3Ew0gC4RmDClyBLPrx9OFCZSRt565EYt6xsSZXJ4D0LcHe2voXzHNOr-c

Questionnaire in English: https://www.ohchr.org/Documents/Issues/Disability/OlderPersons/Questionnaire_EN.docx

Questionnaire in French: https://www.ohchr.org/Documents/Issues/Disability/OlderPersons/Questionnaire_FR.docx

Questionnaire in Spanish: https://www.ohchr.org/Documents/Issues/Disability/OlderPersons/Questionnaire_SP.docx

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: e.kofmel@autisticminority.org

CALL: Autistic people killed by police

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:

https://www.ohchr.org/Documents/Issues/Executions/PoliceUseForceMentalDisability.pdf

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 foresee 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:

https://www.ohchr.org/en/issues/executions/pages/srexecutionsindex.aspx

Concise and focused submissions, with the subject heading "Disabilities report 2019", should be sent to: eje@ohchr.org

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: e.kofmel@autisticminority.org

Thanks.