On 31 March 2017, the United Nations hosted two meetings dedicated to the World Autism Day 2017. In the morning, “Toward Autonomy and Self-Determination” meeting was organized by the United Nations Department of Public Information and Department of Economic and Social Affairs. The event was co-sponsored by the Permanent Missions of Argentina, Armenia, Bangladesh, Bulgaria, Denmark, Ecuador, Israel, Italy, Kazakhstan and Poland. In the afternoon, another meeting, dedicated to the World Autism Day 2017 took place, “Population in Movement: Addressing the Opportunities and Challenges to Ensure Care and Services to the Migrants with Autism and Developmental Disabilities”.
Opening remarks:
Christina Gallach, Under-Secretary-General for Communications and Public Information: We come together to renew our commitment to raising awareness of the rights of persons with Autism to equal opportunities and full participation in society on equal basis with other citizens. To achieve this inclusive society that we aspire to, we must ensure that the fundamental rights of persons in the Convention on the Rights of Persons with Disabilities are known and most important are respected. Today, we are focusing on the rights of persons with Autism to legal capacity and equal treatment before the law. This is not a new right that has recently been codified. It is a right that is being recognized since the Universal Declaration of Human Rights, which came into being almost 70 years ago. Article VI of the Declaration reads: Everyone has the right to recognition, everywhere as a person before the law. Yet, we know that reality does not always match the letter of the law. Far too often, persons with Autism and persons with other disabilities have been denied this basic right. This is partly why the Convention on Rights of Persons with Disabilities was adopted 10 years ago. We were all very much concerned that persons with disabilities continued to dace barriers to equal participation in society. This is also why we are here today. Our hope is that today’s event will help to bring much needed light to the issue.
Message of the Secretary-General of the United Nations, delivered by Christina Gallach: On this World Autism Awareness Day let us play a part in changing attitudes towards persons with Autism and in recognizing their rights as citizens who, like everyone else, are entitled to claim those rights and make decisions for their lives in accordance with their own will and preferences. Let us also renew our promise engraved in the 2030 Agenda for Sustainable Development to leave no one behind and ensure that all people can contribute as active members to peaceful and prosperous societies. As the United Nations Convention on the Rights of Persons with Disabilities points out legal capacity and equal recognition before the law and inherent rights that persons with Autism enjoy on an equal basis with other members of our societies. In the exercise of those rights and their freedom to make their own choices let us ensure that we make available the necessary accommodations and supports for the persons with autism. With access to the support they need and choose, they will be empowered to face the key milestones in person’s life. Such as deciding where and with whom to live, whether to get married and establish a family, what type of work to pursue and how to manage their personal finances. When they enjoy equal opportunity for self-determination and autonomy, persons with Autism will be empowered to make an even a stronger positive impact on our shared future.
E. Mr. Masud Bin Momen, Acting President of the General Assembly deliver the statement by Peter Thompson, the President of the General Assembly: Autism is a life-long neurological condition that we know far too little about. What we do know is that it affects 1/160 people across our world. What we do know is that it is indiscriminate affecting people irrespective of the gender, race, or socio-economic status. What we do know is that it is a spectrum disorder that affects people in dramatically different ways. What we do know is that it seriously affects the lives and opportunities of those affected by it, as well as those of their families. And, what we do know is that lack of understanding of the causes, symptoms and effects of Autism has, in many cases, led to the proliferation of misinformation, anxiety and confusion. This is why, events such as this, are so important. And this is why we must commit to further action. We must do more to ensure that individuals and families, affected by Autism, are able to live lives of dignity and in full enjoyment of their human rights. We must uphold legal protections so that individuals are able to exercise personal autonomy, legal capacity, and have the freedom to make their own choices on matters that affect their lives in line with the Convention on the Rights of Persons with Disabilities. We must help define solutions that address the needs of individuals and families affected by Autism. Including by funding early detection and early intervention programs, and much needed medical research. We must work to change negative attitudes that dwell stigmatization, discrimination and social exclusion. We must provide support services to individuals and their families to ensure that they can access education, skills development and employment. And we must ensure that people with Autism are not left behind as part of our efforts to implement the 2030 Agenda for Sustainable Development. But rather to empower them as equal contributors in these efforts. The international community’s responsibility to people with Autism is to ensure that ultimately, Autism does not define them. We must see people with Autism as who they are: people with ideas, capacity and the contribution to make. And we must do all we can not only on World Autism Day, but each and every day to ensure that we and they realize their full potential.
Keynote was delivered by Professor Simon Baron-Cohen, Director of Autism Research Centre, University of Cambridge, U.K.: At least 1% of the world’s population is on the Autism spectrum. Which equates into some 70 million. People with Autism on the Planet. We are here today to make sure that the world is thinking about them and their families. Autonomy and self-determination for people with Autism cannot be separated from a discussion of their human rights, which is the focus of my address. Before we consider human rights and Autism, what is Autism?
Autism is a spectrum of neurological disabilities involving difficulties with social relationships, communication, adjusting to unexpected change, dealing with ambiguity, and entailing sensory hypersensitivity and anxiety. Autism leads to a different perceptual and learning style. So that the person has preference for detail and develops unusually narrow interest and an unusually strong preference for facts, patterns, repetition and routine. Autism is an example of neurodiversity. That our brains are not wired the same. Differently wired brains lead to different profiles of strengths and challenges and should not be judged as “better or worse”. They are just different. And people with Autism are asking or two reasonable things: acceptance of their difference and respect for their difference. Autism is caused by genetic factors, interacting with environmental factors and is often accompanied by medical symptoms, such as epilepsy or gastro-intestinal differences.
People with Autism need their diagnosis to reflect that they are suffering and need support. Autism is not a disease in a classical sense because although it invariably leads to disability, it also often leads to talent. For example, an excellent attention to detail and excellent ability to spot patterns. The Autism Spectrum disorder is broad because at least half of people with Autism have good language and intelligence, while others have additional disabilities in development and in learning. But all people with Autism, like everyone with a disability, have legal capacity, even if they need support to make decisions and need safeguarding. Autonomy and self-determination of people with Autism cannot be separated from their human rights. It is fitting that we are discussing this at the United Nations, since the first Universal Charter of Human Rights in the history of our planet was created right here, in 1948.
Before 1948, there was no international universal charter that protected human rights. That was how, for example, in Nazi Germany during the Holocaust, people with intellectual disability were killed in their thousands under the compulsory euthanasia laws. Many of these individuals likely had Autism even before we had a name of it. As the first report of Autism by Dr. Leo Canner was published during WWII. Let us remember the Holocaust victims with Autism since unlike other persecuted groups, were there were some survivors who could speak out, those people with Autism who were killed by the Nazis are largely forgotten. Violations of the human rights of people with Autism go back further than that. Since here, in the U.S., in 1920 in the name of eugenics many States passed laws to compulsorily sterilize people with intellectual disability, including those who today we would recognize had Autism. That was why the world cried out “We need a Universal Charter for Human Rights”. In 1948, the newly created United Nations adopted the Universal Declaration of Human Rights. To my mind, one of the most important documents ever written. The Declaration lists 30 fundamental human rights. And they should be compulsory reading in school to ensure children learn them. Fast forward to 2006, basic human rights were still not reaching people with disabilities. So, the UN Convention on the Rights of People with Disabilities was adopted here, in New York. It now has 160 signatories from around the world. Surely, you might think, today people with Autism enjoy human rights to the same extend as everyone else. Sadly, this is still far from the case. I have not got time to look at all 30 human rights, but let us look at a handful of these to see how people with Autism are still deprived of human rights.
First, the Right to Dignity. According to the National Autistic Society in the U.K., half of the adults report that they have been abused they thought was a friend. A quarter of adults with Autism have had their money stolen from them by someone they thought was a friend. And a third of adults with Autism have been manipulated to do something they did not want to do, again, by someone they thought was a friend. These, so-called “mate crimes”, arise because the person with Autism is vulnerable because of their social naivety, their tendency to take what people say at face value. What kind of a world is it where half of adults with Autism report they stay home because of fear of being abused in some way. Individuals with intellectual disability, including those with Autism, are three times more likely to be victims of abuse or neglect, robbery or assault. So, on this first human right, the right to dignity, as civilized nations, we are failing to protect the rights of people with Autism.
Second, the Right to Education. Again, the statistics are shocking. 1/5 children with Autism have been excluded from school. They may be excluded for many reasons. Whatever the reason for being excluded, they are being deprived of their right to education. And the other 80% of children with Autism have stayed in school miserably, half of them report having been bullied. Bullying makes a child feel bad about him- or herself, feel rejected, and develop fear and insecurity. Bullying turns the child off school, so that many children with Autism avoid school. Being bullied at school is a risk factor for depression. Many teenagers with Autism dropped out of school, so that they end up with few formal qualifications despite their good intelligence. Or they underperform in exams because of their unhappy educational experience. In France, 80% of the teenagers do not attend secondary mainstreamed school. I have visited some fantastic examples of educational good practice for children with Autism, which show what can be done when we design our school to be Autism-friendly. But these awful statistics again suggest we are failing to protect the rights of people with Autism.
Third, the Right to Equal Access to Public Services. 1 in 3 adults with Autism experiences severe mental ill health because of lack of support. When I worked in a clinic for adults with Asperger’s Syndrome, a subgroup of Autism, 2/3 of them felt suicidal and 1/3 of them felt so bad that they attempted suicide. A new research from Universities of Cambridge and Coventry in the U.K., we have found that among those who have died by suicide, approximately 12% of them had definite or probable Autism. Every suicide is a personal and a family tragedy.
The audience had a minute of silence to remember people with Autism, who became victims of suicide.
Professor Simon Baron-Cohen, Director of Autism Research Centre, University of Cambridge, U.K.: Finding such a shockingly high rate of Autism in people who have died by suicide is not surprising when you consider how many of these individuals did not have the benefit of early diagnosis and instead struggled undiagnosed and without proper support. Early diagnosis is possible in childhood. There are screening measures that can detect Autism in toddlers. But most countries do not screen for Autism in the preschool years, or indeed during the childhood or in the teens. In the U.K., in many areas, the waiting time for diagnosis can be up to a year or longer, leaving the person confused and with no help. Waiting a year for a diagnosis would be totally unacceptable for other medical conditions. But Autism remains a low priority for health service funding. Even when a person gets their diagnosis, they are often left with no follow-up, feeling marginalized and excluded from the society. In high and middle income countries, people with Autism may receive a formal diagnosis, but in low-income counties the majority of people may be undiagnosed either because of stigma or ignorance, or lack of basic services or specialist clinicians. So, regarding the rights to equal access to public services, once again, we are failing to protect the rights of people with Autism.
Fourth, the Right to Work and Employment: A shocking statistic that only 15% of adults with Autism are in full-time employment. Despite, many having good intelligence and talents. The right to work should extend to everyone, whatever support they might need. Employment makes one feel valued and included in society and gives one autonomy to determine one’s own life. Unemployment makes one feel excluded, unvalued and lead to low self-confidence and low self-esteem. Unsurprisingly, unemployment is another risk-factor for depression. The barriers to employment for people with Autism are many, but one may be discrimination t the interview stage. If this depends on being able to make eye contact and the ability to communicate, as these are the key areas of disability in Autism. Thankfully, some enlightened employers, like the German company Auticon, the Danish company Specialisterne, and the German company SAP are setting example of how to transition individuals with Autism into employment. And how the employers can make reasonable adjustments for people with Autism. But, at present, in the right to work and employment, again, we are failing to protect the rights of people with Autism. (To watch full speech by Professor Simon Baron-Cohen, click here).
The meeting included five penal discussions under the title
“Individual Milestones and Legal Capacity”
Panel 1. Supported vs. Substitute Decision-Making.
Introduction by Maher Nasser, Director of Outreach Division, Department of Public Information, UN; Moderator: Lee Hawkins, Journalist, The Wall Street Journal; Prof. Theresia Degener, Vice Chairperson, UN Committee on the Rights of Persons with Disabilities; Prof. Robert Dinerstein, Professor of Law, Washington College of Law, American University, Zoe Gross, Director of Operations, Autistic Self Advocacy Network.
Panel 2. The Rod to Independent Living: From Early Intervention through College.
Moderator: Sofia Lachapelle, Journalist, Telemundo; Daniel Ewig, Self-Advocate and Rooster Ranch Leader, Autism Housing Network; Prof. Janet Mulvey, Director of Oasis Program, Pace University; Lisa McCauley Parles, Esq. Attorney, Parles Rekem; Zemi Yenus, Founder and Director of the Joy for Children with Autism and other Developmental Disabilities in Ethiopia.
Panel 3. Navigating Relationships: Dating, Marriage and Parenthood.
Moderator: Caren Zucker, Journalist and TV Producer, Co-Author of “In a Different Key: The Story of Autism”; Dr. Julia Ejigu, Founder and Director of Autism Care and Support Initiative, Nigeria; Hillary Freeman, Est. Attorney, Freeman Law Offices; Anita Lesko, Certified Registered Nurse and Self-Advocate; Walker Suskind, Spokesperson, Consumer Financial Protection Bureau, and Advocate for Sibling Engagement.
Panel 4. Vocational Training and Employment: A Key to Independence and Self-Sufficiency.
Moderator: John Donvan, Correspondent, ABC News, Co-Author of “In a Different Key: The Story of Autism”; Antonio Cisneros, Human Rights Officer, Office of the High Commissioner for Human Rights, UN; Paola Jelonche, Attorney and Member of TGD Padres (PDD Parents), Argentina; Noah McCourt, Former Candidate for Waconia City Council, MN, and Self-Advocate; Maria Wroniszewska, Programme Manager of SYNAPSIS Foundation, Poland.
Panel 5. The Way Forward: the 2030 Agenda and the Commitment to Leave No One Behind.
Moderator: Maher Nasser, Director of Outreach Division, Department of Public Information, UN; Thomas Gass, Assistant Secretary-General for Policy Coordination and Inter-Agency Affairs, UN; Jackie Pilgrim, Artist, Poet, Blogger and Self-Advocate; Dr. Barry Prizant, Clinical Scholar, Researcher and Author of “Uniquely Human: A Different Way of Seeing Autism”.
The meeting featured short videos from the documentary “The Swim Team”, a film about a competitive swim team that includes teens on the Autism spectrum.
Watch “Toward Autonomy and Self-Determination” meeting here.
Immediately after the meeting, there was a Meet the Authors event in the UN Bookstore. This event featured the following authors:
Barry M. Prizant and his most recent book “Uniquely Human: A Different Way of Seeing Autism”
John Donvan and Caren Zucker and their book “In a Different Key: The Story of Autism”
On the photo (left to right): Barry M. Prizant, Caren Zucker, and John Donvan.
-Vera Dimoplon
This guest post was written by Vera Dimoplon. Vera is a graduate student at the Seton Hall School of Diplomacy and International Relations. Her specializations are International Organizations, Global Negotiations and Conflict Management. Vera’s interests are the operation of international organizations in multilateral community, negotiations among multinational actors, and conflict management.