Minority status for autistic persons

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

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

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

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

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

"The statement reads thus-

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

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

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

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

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

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

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

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

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

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

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

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

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

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

CALL/CONF: Consult and involve DPOs

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

You can read the Draft General Comment here:

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

More information:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Deadline: 15 May 2018

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

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

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

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

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

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

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

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

OHCHR study on autistic peer support

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

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

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

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

Download link for the study:

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

Joint HRC statement on autism

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.