News and Knowledge

On March 31, the United Nations held a special event in observance of World Autism Awareness Day that addressed the importance of ensuring equal rights for people with autism. The fundamental rights to dignity, autonomy, and self-determination were at the forefront of these discussions.

In his statement to the international community, Secretary General Antonio Guterres emphasized the importance of making sure those on the spectrum have access to the supports they need. By providing the necessary accommodations and supports, he asserted, people with autism are empowered to reach their highest potential.

Guterres went on to say that an inclusive society requires individuals with autism to have equal legal capacity and recognition before the law in all aspects of life. This right is guaranteed by the 2008 Convention on the Rights of Persons with Disabilities, which was made to promote, protect, and ensure all human rights and fundamental freedoms to people with disabilities. It recognizes the right of persons with disabilities to independence of person and to individual autonomy.

During a special panel on the subject, Zoe Gross, director of operations at the Autistic Self Advocacy Network, spoke out against guardianship laws (or, substituted decision-making), as obstacles to total autonomy for people with ASD. When people on the spectrum turn 18, their caregivers are encouraged to become their legal guardians. Gross, a self-advocate, explained how this practice deprived people with autism of their basic rights. The ability to influence decisions such as “where you live, where you work, who you spend time with, whether you want to get married or have children, even whether to have medical procedures” are often forfeited to the guardian. In some states, adults under guardianship have had to forfeit their right to vote; in extreme cases, some have even been forced to undergo involuntary sterilization. Theresia Degener, chairperson of the U.N. Committee on the Rights of Persons with Disabilities, went so far as to call substituted decision-making “a human rights violation,” saying that despite being intended to protect individuals on the spectrum, it is actually a form of “oppression.”

Around the world, 1 percent of the entire population — ­roughly 70 million people — has an autism spectrum disorder. As noted by Peter Thomas, president of the General Assembly, there must be an understanding and appreciation for the skills and abilities of people with autism in order for people of the spectrum to gain equality. “A lack of understanding of the causes, symptoms, and effects of autism has in many cases led to a proliferation of misinformation, anxiety, and confusion.” The growing support for the neurodiversity movement is helping more people appreciate that “differently wired brains lead to different profiles of strengths and challenges, and should not be judged as better or worse. They’re just different. People with autism are asking for acceptance and respect.”