“Autism is not a tragedy… ignorance is.”

Autism, also known as Autism Spectrum Disorder (ASD) is a neuro-developmental disorder that severely affects communication and the formation of relationships. It impairs one’s ability to communicate and interact, and is also characterized by obsessive, repetitive, and stereotyped interests or patterns of behavior. ASD is found in individuals around the world, regardless of race, culture, or economic background. According to a report by the UN World Health Organization, about one in every 270 people has ASD. Autism symptoms typically become clearly evident during early childhood, between 12 and 24 months of age. The exact cause of ASD is unknown but some of the suspected risk factors for autism include; having an immediate family member with autism, genetic mutations, fragile X syndrome and other genetic disorders, being born to older parents, low birth weight, metabolic imbalances, exposure to heavy metals and environmental toxins, and a history of viral infections among others.

The level of autism awareness in Uganda is pathetically low. Efforts to increase public awareness and sensitivity towards autism from the grassroots levels is urgently needed. The government has not yet recognized autism as an independent disability; the current law in place -the Persons with Disabilities Act of 2019 does not include autism as a category of disability. There is also no government initiative or funding for educational and specialized services for children living with autism. Because autism a mental disability, society often doesn’t recognize it, unlike physical disabilities. As a result, thereof, people living with autism are often unable to enjoy the rights, freedoms, and opportunities of persons living with disabilities.

Understanding autism starts with awareness. James Guttman is a father of two children; a nonverbal eight-year-old living with autism and a non-stop-verbal eleven-year-old who isn’t living with autism, “It is amazing what we can get used to. My son has autism and is nonverbal. Yet, to my family, it’s all just business as usual. There is nothing anymore shocking or confusing about it than there is with raising our neurotypical daughter. We see him as part of us. He’s part of our group. He’s part of our normal”, He recounts. “When we increase everyone’s understanding of what autism is, it leads to their acceptance of people like him. With awareness, people can realize that, while autism isn’t necessarily in their home, it’s in their community, it’s not something to fear or gawk at”.

In the Human Rights framework, the Convention on the Rights of Persons with Disabilities (CRPD) to which Uganda is a party places an obligation on states to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by people with disabilities, and to promote their dignity. To achieve an inclusive society, we must ensure that the fundamental rights enshrined in the CRPD are known and respected. Article 19 of the Convention is to the effect that State Parties shall recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including services and facilities for the general population being available on an equal basis to persons with disabilities and are responsive to their needs. “Autonomy and self-determination for people with autism cannot be separated from a discussion of their human rights,” said Simon Baron-Cohen, Director of the Autism Research Center at the University of Cambridge, in his address in 2017 ahead of World Autism Awareness Day.

Efforts are therefore needed to educate communities and raise general awareness about autism to improve public perceptions and to reduce the dehumanization and public stigmatization of persons living with autism. Other important interventions include; promoting self-advocacy among persons living with autism and parents of children with ASD by building their capacity to become self-advocates within their community settings and advocating for opportunities that may enable them to acquire useful skills so that they can fully utilize their potential.

BY: NAMPWERA CHRISPUS

LEGAL OFFICER AT THE CENTRE FOR FOOD AND ADEQUATE LIVING RIGHTS