Joint HRC statement on autism / by Erich Kofmel

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