A Call to Autism Action: a Human Rights Perspective

World Autism Awareness Day
March 31, 2017
United Nations, New York City  

“All human beings are born free and equal in dignity and rights.” - Article 1, Universal Declaration of Human Rights

This year, I was honored to attend World Autism Awareness Day at the United Nations in New York City. The theme for the day was “Toward Autonomy and Self-Determination.” The topics ranged from Supported vs. Substitute Decision-Making, The Road to Independent Living, Navigating Relationships, Vocational Training and Employment, and The Way Forward: 2030 Agenda and the Commitment to Leave No One Behind.

Each panel included speakers from around the world, including Ethiopia, Nigeria, Argentina, and Poland. It was fascinating, inspiring, and heartbreaking all at the same time to hear about progress and challenges facing individuals with Autism around the world.

The person who resonated the most with me that day was the keynote speaker, Professor Simon Baron-Cohen, Director of the Autism Research Centre, University of Cambridge. U.K. Professor Baron-Cohen spoke specifically about Human Rights and where individuals with Autism stand, regarding the Universal Declaration of Human Rights, which sets out the basic rights and fundamental freedoms that are inherent to all human beings. There are 30 Articles within the Universal Declaration of Human Rights, and Professor Baron-Cohen chose 6 to focus on and examine in terms of people with Autism.

Article 1

All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood.

Many individuals with Autism are victims of abuse, neglect, manipulation, or coercion. Often, these crimes are committed by someone close to or trusted by the person with Autism. Due to the social naivety, many individuals with Autism will take what any person says at face value, which can result in crime against that person. Many individuals will stay at home for fear of some type of abuse.

Article 26

Everyone has the right to education.

Up to 20% of students with Autism are excluded from school for one reason or another. In addition, many of students who do attend school are bullied which can lead to feelings of rejection, fear, and insecurity. This can lead to students dropping out of school or underperforming on exams or work, despite capability and intelligence.

Article 21

Everyone has the right to equal access to public service in his country.

1 in 3 individuals with Autism experience mental health challenges, made worse by lack of support. This lack of support in some cases can lead to depression, feelings of exclusion, and even suicide. Many individuals struggle undiagnosed and therefore unsupported. Most countries do not screen for Autism in the preschool years or even through childhood. People living in low-income areas may live with no diagnosis for a number of reasons, and even those who do get a diagnosis may not receive any follow-up support. Waiting time for a diagnosis can be up to a year in many areas. This wait time would be unacceptable for other diagnoses.

Article 23

Everyone has the right to work.

Only 15% of adults with Autism are in full time employment, despite many having good intelligence and talents. Employment leads to a feeling of value within your community. Unemployment is another risk factor for depression. For many, employment discrimination begins at the interview stage where the expectations for eye contact and communication are the very indications of an Autism diagnosis.

Article 24

Everyone has the right to rest and leisure.

There are many situations where people with Autism have been asked to leave a public area, like a store or a movie, due to their behavior. This would not be tolerated with other diagnoses. Half of adults with Autism report they feel lonely, one-third rarely leave their house, and two-thirds report feeling depressed. 1 in 4 adults report that they have no friends.

Article 7

All are equal before the law and are entitled without any discrimination to equal protection of the law.

1 in 5 people with Autism are stopped and questioned by police officers, due to unexpected or non-traditional behavior. 5% of those people are arrested. Two-thirds of police officers report that they have had no training in interviewing individuals with Autism.

Baron-Cohen states, “It is clear that just by examining these 6 articles, people with Autism are still falling outside our human rights and therefore face huge barriers towards autonomy and self-determination.“

While Autism awareness is very important, I think this examination of human rights proves that we need to do more. We need to have a call to Autism action. We need to be more accepting, more understanding, more than aware. All people have the right to live their lives to the best of their abilities, however, we need access to our human rights in order to begin. We all have a role to play. What can you do?