Joint HRC statement on autism

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

Autism in UN General Assembly reports

Many of the special procedures of the United Nations Human Rights Council (Special Rapporteurs, Independent Experts, or Working Groups) also submit annual reports to the UN General Assembly. Here are some stray observations with regard to autism from reports to the GA that might be useful for self-advocacy at the national level. You decide.

In 2017, the UN Special Rapporteur on the right to adequate housing as a component of the right to an adequate standard of living, and on the right to non-discrimination in this context, submitted a report on "The right to adequate housing for persons with disabilities". It includes this paragraph:

"55. Standards of habitability vary considerably with different impairments and must respond to both the physical and the social dimensions of housing. Persons with disabilities may find it difficult to build habitable homes in informal settlements and face challenges in relation to maintenance and repair. Protection against violence or abuse is also critical to ensuring habitability for persons with disabilities. Physical modifications may be required to ensure habitability, such as sound-proofing of apartments for persons with autism."

In addition, there are a number of references to persons with psychosocial or intellectual disabilities that might be equally applicable to autistic persons. You can download the report in all six official UN languages from here:

http://ap.ohchr.org/documents/dpage_e.aspx?si=A/72/128

Also in 2017, the UN Special Rapporteur on the rights of persons with disabilities submitted a report to the GA on "Sexual and reproductive health and rights of girls and young women with disabilities", including these findings:

"22. Girls and young women with multiple impairments and those who are deaf, deaf-blind, autistic or have leprosy or an intellectual or psychosocial disability, experience aggravated forms of stigma and discrimination. For example, the pervasive view that girls and young women with intellectual disabilities lack the capacity to understand sexuality and their own bodies, as well as the fear of their relatives of being held responsible for allowing their sexual activity, puts those girls and young women under excessive monitoring and control. [...]

"35. Evidence on sexual and gender-based violence against girls and young women with disabilities is robust. Studies from across the globe show that they are at increased risk of violence, abuse and exploitation compared with those without disabilities, and with boys and young men with disabilities. Overall, children with disabilities are almost four times more likely to experience violence than children without disabilities. However, the risk is consistently higher in the case of deaf, blind and autistic girls, girls with psychosocial and intellectual disabilities and girls with multiple impairments. Belonging to a racial, religious or sexual minority, or being poor, also increases the risk factor for sexual abuse for girls and young women with disabilities. Humanitarian crises and conflict and post-conflict settings generate additional risks of sexual violence and trafficking that affect girls with disabilities."

The report is available here:

http://www.ohchr.org/Documents/Issues/Disability/A_72_133_EN.docx

While these issues are important, unfortunately there is, despite our written submission during the consultation on this report, no mention of autistic people's concerns regarding new reproductive technologies, such as the prospect of a pre-natal genetic test for autism.

Already in 2015, the UN Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health submitted a report on the right to health in early childhood – right to survival and development. It includes a section on children with disabilities that refers to autism and developmental disabilities:

"82. Despite being more vulnerable to health and developmental risks, young children with disabilities are often overlooked in mainstream programmes and services designed to promote health to ensure child development. They also often do not receive the specific support required to meet their needs in accordance with their rights. Children with disabilities and their families are confronted with barriers that include inadequate legislation, policies and services, negative attitudes and a lack of accessible environments. Children with developmental disabilities, including intellectual disabilities and autistic-spectrum conditions, are still suffering from outdated approaches in many countries such as institutionalization and excessive medication.

"83. Early intervention services for children with disabilities should follow a human rights-based approach, including provisions of the Convention on the Rights of Persons with Disabilities. Governments should ensure that all young children with disabilities grow up in families and that they and their families receive all necessary services to remove barriers and promote their rights in the same manner that the rights of children without disabilities are promoted. Practices based on institutional care and overuse of biomedical interventions for young children with developmental disabilities should be abandoned as they are outdated and often violate basic rights and freedoms."

http://daccess-ods.un.org/access.nsf/get?open&DS=A/70/213&Lang=E

During the consultation on this report, we submitted our concerns with regard to early intervention and behaviour modification "therapies", such as Applied Behaviour Analysis (ABA). They do not seem to have been taken into account.

UN call for legal capacity reform

The latest report by the United Nations Special Rapporteur on the rights of persons with disabilities, submitted to the March 2018 session of the UN Human Rights Council, is on legal capacity reform and supported decision-making - topics also covered by the UN Committee on the Rights of Persons with Disabilities in its General Comment No. 1 in 2014 (http://tbinternet.ohchr.org/_layouts/treatybodyexternal/Download.aspx?symbolno=CRPD%2fC%2fGC%2f1&Lang=en), but the Special Rapporteur's report takes a more practical approach, looking at ways countries are or should be meeting their obligations under the Convention on the Rights of Persons with Disabilities.

http://www.ohchr.org/Documents/Issues/Disability/A.HRC.37.56.docx

Autistic persons are mentioned twice specifically, but we recommend that you read the entire report:

"15. Throughout history, many groups have been denied their legal capacity as both legal standing and legal agency, including women, minority groups, indigenous persons, migrants, refugees and asylum seekers. Among them, persons with disabilities face a wide range of violations to their right to legal capacity in all jurisdictions worldwide. Challenges are particularly acute for persons with psychosocial disabilities, persons with intellectual disabilities, autistic persons and persons with dementia. Their legal capacity is usually restricted on the basis of having a medical condition or impairment (status approach), having made a decision perceived as poor (outcome approach), or having deficient decision-making skills (functional approach). Once their legal capacity is restricted in one or more areas of life, they are put under a substitute decision-making regime such as guardianship or curatorship, where a legal representative is appointed to make decisions on their behalf, or where decisions will be made by designated medical personnel or by a court. [...]

"27. [...] States must develop supported decision-making arrangements of varying types and intensity, including informal and formal support arrangements. Such arrangements include, for example, support networks, support agreements, peer and self-support groups, support for self-advocacy, independent advocacy and advance directives. Contrary to substitute decision-making regimes, under a supported decision-making arrangement, legal capacity is never removed or restricted; a supporter cannot be appointed by a third party against the will of the person concerned; and support must be provided based on the will and preferences of the individual. The right to legal capacity is not contingent on the acceptance of any form of support or accommodation, as persons with disabilities have the right to refuse them. [...]

"54. The different models of supported decision-making include, among others, formal and informal networks, support agreements, independent advocates, peer support, advance directives and personal assistance. Such schemes provide a very broad range of support to individuals, including access to information, support for communication, empowerment, building self-confidence, relationship building, personal planning, independent living assistance and administrative support. Moreover, while in many jurisdictions supported decision-making involves the appointment of one or more individuals, in practice support is also provided in group settings or using a mixed structure that incorporates both individual and group support. Legislation needs to acknowledge this diversity in supported decision-making regimes. However, there is little recognition of peer support in legislation, despite its potential to assist persons with disabilities in exercising their legal capacity.

"55. Most supported decision-making schemes reviewed for the present report tend to concentrate on a specific group of persons with disabilities. While some pilot projects have attempted to include a diverse range of participants, the diversity of the disability community requires a response to a very broad range of support needs and specific groups may be in the best position to define those support needs. Furthermore, persons with a high level of support needs, including those with severe cognitive impairments, non-verbal communication and/or complex needs, are usually excluded. In that regard, providing access to a broad range of support arrangements seems better than developing a single model of supported decision-making. A 'one size fits all' approach to supported decision-making is ineffective and discriminatory. States should take steps to ensure that all persons with disabilities are provided with the opportunity to access supported decision-making measures. [...]

"61. Communities also play a role in developing support alternatives, such as support networks or peer and self-support groups, as well as helping people to access existing support networks, particularly persons with a high level of support needs and older persons with disabilities, who may lack other sources of support. Indeed, community-based approaches for the provision of support constitute an effective strategy to ensure that responses consider geographical, social, economic and cultural issues [...]. According to article 19 of the Convention, legislation must ensure a community-based approach in the provision of supported decision-making and facilitate the flourishing of social networks that ensure the individual autonomy and self-determination of persons with disabilities. [...]

"68. Pilot initiatives should be implemented in collaboration with civil society organizations, particularly organizations of persons with disabilities who represent the full range of potential support users, including persons with intellectual disabilities, persons with psychosocial disabilities, persons with dementia, autistic persons and persons with brain injuries. That is in order to benefit from the outreach capacity of organizations of persons with disabilities, their knowledge of the local context and their mobilization and advocacy capacity [...]. Supported decision-making experiences can also benefit from involving a broad range of local stakeholders, including authorities and service providers. Evaluation should be considered during programme design, including qualitative data that incorporates the perspectives of participants. [...]

"69. [...] Research on supported decision-making has predominately concentrated on formalized forms of support, with little attention paid to other informal forms of support in decision-making, such as natural support networks or the support provided in the framework of peer support groups. There is a need to understand how all those forms of support operate and how they relate and contribute to the exercise of legal capacity of persons with disabilities."

On the downside, while the report calls for a repeal of discriminatory mental health legislation, it omits to call also for the repeal of discriminatory autism legislation that in practice has the same effect of depriving many of us of legal capacity. And we keep cautioning the UN against a purely non-autistic understanding of community. Autistic communities should not be thought of as geographic in nature. Autistic communities tend to meet online. Self-help groups will sometimes meet up in physical locations, but more often make use of cyberspace. Autistic self-advocacy organizations frequently operate across borders, assisted by information technology. Peer support or services to autistic persons, i.e. in exercising their legal capacity, may thus be provided by an individual or a group that is based elsewhere. The definition of "community" needs to be expanded to take into account autistic realities and preferences.

Restraints and seclusion in schools

On 4 April 2016, Autistic Minority International organized a World Autism Awareness Day side event and thematic briefing on "Autistic behaviours and the use of physical and mechanical restraints and seclusion in schools" for the expert members of the United Nations Committee on the Rights of Persons with Disabilities.

Our speakers were Briannon Lee and Michelle Sutton, co-conveners of the Autistic Family Collective (Australia), Riki Entz, chapter co-leader of the Autistic Self Advocacy Network (Canada), and Helena Stephenson, a survivor of restraint and seclusion in school and campaigner against their continued use in the United States.

Rationale: Education is not inclusive when students with disabilities, such as autistic children, are subjected to restrictive practices or aversive procedures/interventions, including physical, mechanical, and chemical restraint and seclusion/isolation, in special and regular schools alike, for the purpose of managing and modifying their behaviour and enforcing discipline and compliance. Children with disabilities are restrained by teachers and other school staff by being pinned to the floor, tied down to a chair, taped to the wall, and so on. Students may be locked into seclusion rooms, closets, or cages frequently and for lengthy periods of time, with no way of escape. Often they are unable to communicate the abuse, and parents will not be informed. Children have died, and post-traumatic stress is common in adult survivors.

From Erich Kofmel's opening and chairing remarks: "In 2013, your Committee noted in its Concluding Observations on Australia 'that persons with disabilities, particularly those with intellectual impairment or psychosocial disability, are subjected to unregulated behaviour modification or restrictive practices such as chemical, mechanical and physical restraints and seclusion, in various environments, including schools, mental health facilities and hospitals'. Unfortunately, the Committee then missed the opportunity to recommend a ban on restraints and seclusion in schools, and instead recommended the abolition of 'intrusive medical interventions' only, disregarding that restraints and seclusion in schools serve no medical purpose, but rather aim at managing and modifying students' behaviour and enforcing discipline and compliance.

"Autistic students are at a particular risk of becoming the victims of such abusive, degrading, and torturous restrictive practices or aversive procedures or interventions, be it in special or regular schools. With the General Comment on inclusive education, you now have an opportunity to rectify the previous omission and protect these children. We urge the Committee to add a paragraph to the General Comment rejecting the use of restraints and seclusion in schools. Our speakers today will tell you why. [...]

"There is no excuse for violence by teachers and school staff against students with disabilities.

"[In] the United States, [...] restraints and seclusion were used at least 267,000 times in the school year 2011-12. There were 163,000 instances of restraint and 104,000 of seclusion. In 75 percent of the cases, it was kids with disabilities who were restrained or secluded. In less than 7 percent of the incidents reported was the child considered 'violent'. Over 70 percent of the incidents reported the child as 'non-compliant' before the incident occurred. Many US students have died because of restraints and seclusion, such as Jonathon King, who had spent so much time in a seclusion room at his school that he had told them he was going to kill himself if they put him back in there. On Jonathon's final day, he was placed in seclusion because his pants were too big. The school gave him a rope to hold his pants up, but put him in the seclusion room regardless. Jonathon hung himself from the seclusion room door with the very rope the school gave him."

Unfortunately, the USA hasn't ratified the Convention on the Rights of Persons with Disabilities, which means that the CRPD Committee isn't able to comment on this practice there. But they are able to comment on its use in countries such as Australia, the UK, and Canada.

Subsequent to our side event, the Committee did indeed include a reference to restraints and seclusion in its General Comment No. 4 on the right to inclusive education, adopted in August 2016:

"51. Persons with disabilities, in particular women and girls with disabilities, can be disproportionately affected by violence and abuse, including physical and humiliating punishments by educational personnel, for example through the use of restraints and seclusion and bullying by others in and en route to school. To give effect to article 16 (2), States parties are required to take all appropriate measures to provide protection from and prevent all forms of exploitation, violence and abuse, including sexual violence, against persons with disabilities. Such measures must be age-, gender- and disability-sensitive. The Committee strongly endorses the recommendations of the Committee on the Rights of the Child, the Human Rights Committee and the Committee on Economic, Social and Cultural Rights that States parties prohibit all forms of corporal punishment and cruel, inhuman and degrading treatment in all settings, including schools, and ensure effective sanctions against perpetrators. It encourages schools and other educational centres to involve students, including students with disabilities, in the development of policies, including accessible protection mechanisms, to address disciplinary measures and bullying, including cyberbullying, which is increasingly recognized as a growing feature of the lives of students, in particular children."

The General Comment also includes two references (paragraphs 6 and 35 d-f) to autism and inclusive education. Unfortunately, most of the issues we raised from the autistic perspective during the consultation phase on this General Comment weren't addressed.

http://docstore.ohchr.org/SelfServices/FilesHandler.ashx?enc=6QkG1d%2fPPRiCAqhKb7yhsnbHatvuFkZ%2bt93Y3D%2baa2r7WiHwAXZ%2fG9E0uHt5DxBGZc%2fFYqJnjv7FqnztqhiHjL6HK2ahbb93gALzYRp%2fNPbB4kYh9RqO15ijXwSYDQWO

UN on consulting autistic persons

The United Nations Committee on the Rights of Persons with Disabilities has adopted its General Comment No. 6 on equality and non-discrimination.

http://tbinternet.ohchr.org/Treaties/CRPD/Shared%20Documents/1_Global/CRPD_C_GC_6_8649_E.docx

It includes one reference to autistic persons:

"33. Regarding the consultation obligations of States parties, article 4 (3) and article 33 (3) of the Convention emphasize the important role that organizations of persons with disabilities must play in the implementation and monitoring of the Convention. States parties must ensure that they consult closely and actively involve such organizations which represent the vast diversity in society, including children, autistic persons, persons with a genetic or neurological condition, persons with rare and chronic diseases, persons with albinism, lesbian, gay, bisexual, transgender or intersex persons, indigenous peoples, rural communities, older persons, women, victims of armed conflicts and persons with an ethnic minority or migrant background. Only then can it be expected that all discrimination, including multiple and intersectional discrimination, will be tackled."

This is promising as the Committee currently is also working on a General Comment on articles 4 (3) and 33 (3) of the Convention on the Rights of Persons with Disabilities specifically, although it may need to be stressed further that States parties to the Convention must consult with autistic-led organizations (run by and for actually autistic persons), not just organizations of parents of autistic children.

Joint UN statement on autistic rights

With World Autism Awareness Day (2 April) coming up once more, we would like to remind you of the joint statement on the human rights of autistic persons by the United Nations Special Rapporteur on the right to health and the Special Rapporteur on the rights of persons with disabilities for World Autism Awareness Day 2015. Autistic Minority International was asked to provide input for this statement, and we encourage you to use it during your own WAAD events and as an important advocacy tool all year round.

The joint statement is available in four of the six UN languages (English, Spanish, French, and Chinese, though not in Arabic or Russian):

English: http://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=15787&LangID=E

Spanish: http://www.ohchr.org/FR/NewsEvents/Pages/DisplayNews.aspx?NewsID=15787&LangID=S

French: http://www.ohchr.org/FR/NewsEvents/Pages/DisplayNews.aspx?NewsID=15787&LangID=F

Chinese: http://www.ohchr.org/FR/NewsEvents/Pages/DisplayNews.aspx?NewsID=15787&LangID=C

Please also share the French, Spanish, and Chinese versions on any relevant fora or social media sites that use those languages.

"Discrimination against autistic persons, the rule rather than the exception – UN rights experts

"World Autism Awareness Day - Thursday 2 April 2015

"GENEVA (1st April 2015) – Two United Nations human rights experts today called for an end to discrimination against autistic persons and a celebration of diversity. Speaking ahead of World Autism Awareness Day, the Special Rapporteurs on the rights of persons with disabilities, Catalina Devandas Aguilar, and on the right to health, Dainius Puras, noted that about one per cent of the world's population - some 70 million people - is estimated to be on the autism spectrum worldwide.

"'As part of human diversity, autistic persons should be embraced, celebrated and respected. However, discrimination against autistic children and adults is more the rule rather than the exception.

"In many countries, autistic persons lack access to services which would support, on an equal basis with others, their right to health, education, employment, and living in the community. When available, services are too often far from human rights friendly or evidence-based.

"Autistic persons are particularly exposed to professional approaches and medical practices which are unacceptable from a human rights point of view. Such practices – justified many times as treatment or protection measures – violate their basic rights, undermine their dignity, and go against scientific evidence.

"Autistic children and adults face the proliferation of medicalized approaches relying on the over-prescription of psychotropic medications, their placement in psychiatric hospitals and long-term care institutions, the use of physical or chemical restraint, electro-impulsive therapy, etc. This may be particularly harmful and lead to the deterioration of their condition. All too often, such practices amount to ill-treatment or torture.

"The autism spectrum should be understood from a broader perspective, including in research. We call for caution about enthusiastic attempts to find the causes of autism and ways to 'cure' autism through sophisticated but not necessarily ethical research. Autism as a condition is a critical challenge for modern health systems, in which we need to ensure that the practice and science of medicine is never again used to cause the suffering of people.

"More investment is needed in services and research into removing societal barriers and misconceptions about autism. Autistics persons should be recognized as the main experts on autism and on their own needs, and funding should be allocated to peer-support projects run by and for autistic persons.

"It is about providing individuals and families with the necessary skills and support to have choice and control over their lives. It is also about equal opportunities, access to inclusive education and mainstream employment to achieve equality and rights enjoyment by autistic persons. It is about promoting their independence and respecting their dignity.

"Autistic persons should be respected, accepted and valued in our societies, and this can only be achieved by respecting, protecting and fulfilling their basic rights and freedoms.'

"Ms. Catalina Devandas Aguilar (Costa Rica) was designated as the first Special Rapporteur on the rights of persons with disabilities in December 2014 by the UN Human Rights Council. Ms. Devandas Aguilar has worked extensively on disability issues at the national, regional and international level with the Strategic Partnerships with the Disability Rights Advocacy Fund, the UN unit responsible for the Convention on the Rights of Persons with Disabilities and the World Bank. Her work has focused on the rights of women with disabilities and the rights of indigenous peoples with disabilities. Learn more, log on to: http://www.ohchr.org/EN/Issues/Disability/SRDisabilities/Pages/SRDisabilitiesIndex.aspx

"Mr. Dainius Pūras (Lithuania) was appointed as the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health by the UN Human Rights Council in June 2014. Mr Puras is a Professor and the Head of the Centre for Child psychiatry social pediatrics at Vilnius University. He is also a human rights advocate who has been actively involved during the last 30 years in the process of transforming public health policies and services, with special focus on the rights of children, persons with mental disabilities, and other vulnerable groups. Learn more, visit: http://www.ohchr.org/EN/Issues/Health/Pages/SRRightHealthIndex.aspx

"The UN Special Rapporteurs are part of what is known as the 'Special Procedures' of the Human Rights Council. Special Procedures, the largest body of independent experts in the UN Human Rights system, is the general name of the Council's independent fact-finding and monitoring mechanisms that address either specific country situations or thematic issues in all parts of the world. Special Procedures' experts work on a voluntary basis; they are not UN staff and do not receive a salary for their work. They are independent from any government or organization and serve in their individual capacity."

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.