UN report on public decision-making

If you haven't done so yet, we strongly encourage you to read the report by the United Nations Special Rapporteur on the rights of persons with disabilities, submitted to the March 2016 session of the UN Human Rights Council, on the participation of persons with disabilities in political and public life and decision-making.

It is available in all six UN languages (including English, French, Spanish, and Arabic) here:

http://ap.ohchr.org/documents/dpage_e.aspx?si=A/HRC/31/62

Autistic Minority International made a written submission during the consultation phase, and we are glad to note that there are a number of explicit references to autistic persons in the report:

"37. The Convention on the Rights of Persons with Disabilities has accelerated the process of establishing organizations of self-advocates with intellectual disabilities, of autistic persons and of other individuals who may need extensive support to express their positions. Organizations of parents and relatives of persons requiring support have often played a role in providing such support and one can find organizations that include parents as well as self-advocates. The role of parents in such organizations should increasingly move towards the provision of support, with self-advocates in full control.

"38. It is important to distinguish between organizations 'of' persons with disabilities, which are led by persons with disabilities, and organizations 'for' persons with disabilities, which are usually non-profit organizations that provide services to persons with disabilities and often also advocate on their behalf. This advocacy role needs to be carefully assessed, as it can easily happen that advocates seek to ensure the continuity of services, regardless of whether or not they are human rights-based or the preferred options of persons with disabilities. The failure of States to acknowledge the distinction between organizations 'of' and 'for' persons with disabilities lies at the heart of historical tensions between the two types of organization, such as those around legitimacy, choice and control, and the allocation of resources. In their pursuit of genuine participation by persons with disabilities in decision-making processes, States need to ensure that the will and preferences of persons with disabilities themselves are given priority. [...]

"60. States must promote the participation of persons with disabilities across all population groups, including those historically discriminated against or disadvantaged, such as indigenous people, poor or rural-based persons, lesbian, gay, bisexual, transgender and intersex persons, and others. States must also ensure that the voices of persons with disabilities from throughout the life cycle are heard (particularly those of children, adolescents and older persons) and from across the whole range of impairments and experiences of disability (including deaf persons, autistic persons, deafblind persons, and persons with psychosocial or intellectual disabilities). [...]

"69. As certain groups of persons with disabilities face additional challenges to their participation in public life, they may be inadequately represented by existing representative organizations in a given country. Accordingly, States must not only encourage and support the participation of persons with disabilities from disadvantaged groups in representative organizations of persons with disabilities, but also show flexibility and establish consultative mechanisms to enable the participation of all persons with disabilities. This is particularly important for persons with multiple impairments, persons with intellectual or psychosocial disabilities, autistic persons and deafblind persons. States must devise outreach strategies aimed at ensuring the participation of these groups. The broad inclusion of persons with disabilities throughout the public decision-making process is one of the most effective tools for States to develop truly inclusive and diverse societies."

In the press release accompanying the report, the Special Rapporteur highlighted the need for autistic self-advocacy organizations once more:

"In her report, Ms Devandas Aguilar urges all governments to engage in direct consultations with organizations of people with disabilities, rather than only those that advocate on their behalf. 'States must prioritize the participation of organizations led and operated by persons with disabilities and support their establishment and functioning,' she explained.

"The Special Rapporteur stressed the importance of engaging with groups who need considerable support, such as autistic people and those with intellectual or psychosocial disabilities."

http://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=17147&LangID=E

Of course, pretty much everything in this report is relevant to the establishing and running of organizations by and for autistic persons and should be used by autistic self-advocates at all levels (local, national, regional, and global) to pressure governments for inclusion in decision-making processes, provision of funding to self-advocacy organizations, and so on.

Malta's autism acceptance law

In May 2016, Malta became the first country to adopt an autism acceptance law, the "Persons within the Autism Spectrum (Empowerment) Act", passed by Parliament and subsequently enacted by the President and published in the Government Gazette. Autistic Minority International was consulted by the Maltese Government, through the good services of an autistic self-advocate from Malta, and was able to provide input on the draft bill earlier that year, including the suggestions to aim for autism acceptance, not just awareness, acknowledge the existence of undiagnosed adults on the autism spectrum, and promote research into ageing on the autism spectrum.

Provisions that may now serve as a model for similar legislation in other countries and jurisdictions include the mandate of the soon to be established Autism Advisory Council to "create awareness raising initiatives for the general public inter alia to achieve autism acceptance within society" and "focus on the need to improve identification of undiagnosed adults within the autism spectrum through a person-centre[d] diagnostic approach, addressing also the topic of autism and ageing", and to "give advice on [...] the promotion of self-determination of persons within the autism spectrum" as well as "the enhancement of access to appropriate support services and equal opportunities for inclusion and participation in society".

In addition, the Autism Advisory Council, which is to include at least one autistic adult, will aim "to empower persons within the autism spectrum by providing for their health, education, well-being and participation in all aspects of society and the betterment of their living conditions; [...] maximize the potential for children and adults within the autism spectrum through their personal autonomy and active citizenship; [...] and [...] identify the socio-economic, psycho-educational and health needs of persons within the autism spectrum with a view for Government to address these needs."

Also on the positive side, we note that the Act avoids speaking of "persons with autism" in favour of "persons within the autism spectrum". Unfortunately, the Act lacks strong provisions with regard to employment, due to domestic political considerations, and it places a misguided focus on early interventions, without paying attention to their potentially abusive nature and frequent disrespect for children's autistic identity.

An Autism Support State Plan and further regulations are to set out the details.

Autism, ageing, and premature death

7 April is World Health Day. In 2017, the World Health Organization (WHO) decided to dedicate that day to "Depression". To commemorate both the United Nations' World Autism Awareness Day (2 April) as well as World Health Day, Autistic Minority International organized a public side event/thematic briefing for the members of the UN Committee on the Rights of Persons with Disabilities on Monday, 3 April 2017, 1.45-2.45 pm, at Palais des Nations, the European headquarters of the UN, in Geneva, Switzerland.

Theme: "Ageing and Premature Death on the Autism Spectrum"

Speakers: Wenn Lawson, psychologist, researcher, lecturer (Australia), Cos Michael, autistic autism consultant (United Kingdom), Alanna Rose Whitney, Autistic Acceptance Activism Alliance (Canada). Chair: Erich Kofmel, President, Autistic Minority International.

This was our fourth annual side event held during the spring session of the Committee mandated to monitor the implementation of the UN Convention on the Rights of Persons with Disabilities (CRPD) in all 177 countries that have ratified it. To the best of our knowledge our event was once more the only commemoration of World Autism Awareness Day at the United Nations in Geneva. All other related UN-based activities were concentrated in New York, even though major decisions with regard to autistic children and adults are made in Geneva, both in the human rights mechanisms and at the WHO. We therefore believe that it is important that actually autistic persons show presence here as well, on this our day.

According to the WHO, depression is the leading cause of disability worldwide. More than 300 million people are living with depression, and even in high-income countries 50% of people with depression do not get treatment. Depression is an important risk factor for suicide, which claims over eight hundred thousand lives each year, 75% of them in low- and middle-income countries. Every 40 seconds someone dies by suicide. It is the second leading cause of death among 15-29-year-olds. There are more deaths from suicide than from war and homicide together.

Many autistic persons never reach old age, falling victim to depression and suicide much earlier in their lives. We believe that depression and suicide in our community are the direct result of unmet needs and a lack of acceptance of autism. Suicide should be seen as a response to a society that is not accepting of autistic persons at all. As autistic self-advocates we believe that autism is not a disorder that needs to be cured or should be stigmatized, but a lifelong neurological difference that is equally valid.

Our previous side events were concerned with moving from autism awareness to autism acceptance (2014), the worldwide pain and sorrow caused by medical experimentation on autistic children (2015), and the devaluing of autistic behaviours and the use of physical and mechanical restraint and seclusion in schools (2016). These themes echoed throughout 2017's presentations. All the experiences we previously laid out before the Committee contribute to a sense of doom and futility that causes depression and suicidal ideation in autistic individuals.

Even though the speakers last year hailed from western countries, autistic persons are one percent of the population in any given country, albeit many of us remain undiagnosed or misdiagnosed due to a shortage of medical professionals qualified to diagnose autism in less developed countries. Many of us are counted for in suicide statistics the world over, without our deaths ever being linked to autism or the societal attitudes and barriers we faced and weren't able to overcome. Ours is an often hidden disability, and our deaths are hidden also.

No other age group illustrates the pressures exercised on us to hide and pretend to be "normal" as much as that of older persons on the autism spectrum, who are nearly invisible. With Asperger syndrome in particular not being diagnosed before the mid-1990s, most autistic adults, who in their majority are not intellectually disabled, never received a diagnosis as a child. Many previously undiagnosed or misdiagnosed adults now finally get an autism diagnosis, often subsequent to a child or grandchild being diagnosed as being on the autism spectrum. Regardless, little attention is paid to autistic adults and even less to elderly autistic persons. When talking about autism, most people still only think of children.

In many countries, support and services for autistic persons end when they reach adulthood. Families are growing increasingly concerned about what will happen to their children and dependent autistic adults when they are not able to take care of them anymore. Autistic adults may age prematurely, and research found that on average we die decades earlier than non-autistic persons, whether from suicide, frequent co-morbid health conditions and a lack of access to autism-appropriate health care, filicide (by relatives) or homicide (by caregivers).

Our side event and thematic briefing therefore sought to address health risks, premature mortality, ageing, and the rights of older persons on the autism spectrum from the perspective of the CRPD. All the examples presented from any one country were equally applicable to all other countries, in their respective context. The geographic origins of our speakers were not meant as a show of disrespect for other cultures and socio-economic situations, but owed to the uneven distribution of awareness of and knowledge about autistic adults and ageing on the autism spectrum.

It may seem frivolous also to talk about premature mortality in the autistic population when viewed from the perspective of countries with a much lower life expectancy in general, for persons with or without disabilities alike, but ultimately the right to life guaranteed by the CRPD applies to all, in all contexts, and any circumstances unduly shortening the life of persons with disabilities anywhere equally demand our urgent attention.

Autism in adulthood and old age may be hidden in most parts of the world, and our deaths may only be counted in suicide statistics, but those children everywhere diagnosed as part of the so-called autism "epidemic" will soon grow up and grow old and join us in demanding autism acceptance and an end to stigma and prejudice against autistic people. Many of us will be consumed by the fight for equality and succumb to depression, but others will take our place and fight on. We may die as individuals, but the worldwide autistic community will only grow stronger with age.

(Speakers' presentations are available upon request.)

Updated WHO factsheet on autism

In April 2017, the World Health Organization (WHO) updated its factsheet on autism spectrum disorders that is supposed to provide key facts, data, and information on epidemiology, assessment, and management, social and economic impacts, as well as other related resources. While speaking of the human rights of autistic persons, they continue to undermine our human rights by using stigmatizing language such as "disorder" and "burden" and recommending early intervention and behavioural treatment (i.e. normalization, Applied Behaviour Analysis/ABA). The parent skills training programme they mention repeatedly was developed in collaboration with controversial US charity Autism Speaks, but without any input from actually autistic people.

http://www.who.int/mediacentre/factsheets/autism-spectrum-disorders/en/

Autism in UN report on mental health

The United Nations Special Rapporteur on the right to health dedicated his 2017 report to the UN Human Rights Council to mental health. It includes a number of explicit mentions of autism and autistic persons.

"4. [...] Some have cognitive, intellectual and psychosocial disabilities, or are persons with autism who, regardless of self-identification or diagnosis, face barriers in the exercise of their rights on the basis of a real or perceived impairment and are therefore disproportionately exposed to human rights violations in mental health settings. Many may have a diagnosis related to mental health or identify with the term, while others may choose to identify themselves in other ways, including as survivors. [...]

"8. For decades, mental health services have been governed by a reductionist biomedical paradigm that has contributed to the exclusion, neglect, coercion and abuse of people with intellectual, cognitive and psychosocial disabilities, persons with autism and those who deviate from prevailing cultural, social and political norms. Notably, the political abuse of psychiatry remains an issue of serious concern. While mental health services are starved of resources, any scaled-up investment must be shaped by the experiences of the past to ensure that history does not repeat itself. [...]

"55. Adequate mental health services must be made available. In many countries, the limited mental health and social care available is based on a narrow biomedical model and institutionalization. [...] Services must support the rights of people with intellectual, cognitive and psychosocial disabilities and with autism to live independently and be included in the community, rather than being segregated in inappropriate care facilities. [...]

"58. Mental health services [...] must be culturally appropriate and acceptable to persons with intellectual, cognitive or psychosocial disabilities and with autism, adolescents, women, older persons, indigenous persons, minorities, refugees and migrants, and lesbian, gay, bisexual, transgender and intersex persons. Many within those populations are needlessly medicalized and suffer from coercive practices, based on inappropriate and harmful gender stereotypes. [...]

"62. In particular, children and adults with intellectual disabilities and with autism too often suffer from institutionalized approaches and excessively medicalized practices. Institutionalizing and medicating children with autism, based on their impairment, is unacceptable. Autism represents a critical challenge to modern systems of care and support, as medical attempts to 'cure' the condition have often turned out to be harmful, leading to further mental health deterioration of children and adults with the condition. Support for them should not only address their right to health, but their rights to education, employment and living in the community on an equal basis with others. [...]

"91. The Special Rapporteur calls for leadership to confront the global burden of obstacles and embed rights-based mental health innovation in public policy. That includes State champions in international policy efforts, the leadership of professional psychiatry in assessing constructively its approach to the necessity for change, managers of mental health services leading change by example and municipal officials championing grassroots innovation. These champions must work in partnership with their constituents, including persons with intellectual, cognitive and psychosocial disabilities and with autism."

Full text of the report in English:

https://documents-dds-ny.un.org/doc/UNDOC/GEN/G17/076/04/PDF/G1707604.pdf?OpenElement

Also available in French, Spanish, Arabic, Russian, and Chinese:

http://ap.ohchr.org/documents/dpage_e.aspx?si=A/HRC/35/21

Unfortunately, in a number of other places where autism should have been mentioned explicitly, it isn't (most importantly, with regard to legislation depriving people of legal capacity). Still, we feel that the mentions of autism are informed by discussions and interactions Autistic Minority International has had with the Special Rapporteur, and autistic self-advocates and allies should be using this report in our ongoing advocacy with the UN and national, regional and local governments.

UN Special Procedures online portal

In the future, if you wish to make written submissions to any of the so-called Special Procedures (Special Rapporteurs, Independent Experts, and Working Groups) of the United Nations Human Rights Council (i.e. Special Rapporteur on Persons with Disabilities, Special Rapporteur on Health, Working Group on Arbitrary Detention, etc.), with regard to the situation of autistic people in your country or other human rights violations, you can use this new online portal that provides detailed guidance on how the process works and what information you will need to submit:

https://spsubmission.ohchr.org/

Call: Study on right to health

The United Nations Special Rapporteur on the rights of persons with disabilities, Catalina Devandas-Aguilar, is currently preparing a study on the right of persons with disabilities to the highest attainable standard of health.

The study will be presented at the October 2018 session of the UN General Assembly.

You can download the questionnaire in English, French, or Spanish from this website:

http://www.ohchr.org/EN/Issues/Disability/SRDisabilities/Pages/StandardOHealth.aspx

The Special Rapporteur welcomes inputs from, among others, "organizations of and for persons with disabilities, civil society, [...] scholars, research institutions [...], community movements, and private individuals".

Submissions in English, French, or Spanish should be sent in accessible format (Word) to:  sr.disability@ohchr.org

Concise responses are encouraged, inclusive of relevant attachments where available.

Deadline: 30 March 2018

You should indicate if you have any objections with regard to your reply being posted on the OHCHR website.

If you have any input toward a possible submission by Autistic Minority International, please send it as soon as possible to: e.kofmel@autisticminority.org

Autism and witchcraft

The United Nations recently held its first expert workshop on witchcraft. In 2018, witchcraft is still a popular accusation levelled at people who "don't fit in", particularly in Africa and among African diaspora communities. Thought of as either witches or bewitched, many of these children and adults are more likely on the autistic spectrum.

http://www.afrik-news.com/article17924.html

https://www.youshareproject.com/absence-autism-africa/

https://www.theguardian.com/uk/2012/mar/01/accusations-witchcraft-pattern-child-abuse