Shedding light on autism in South Sudan
April 2, 2024 9:29 am Leave your thoughtsI am Yar Makuei Manyiel and I am a mother of an autistic child and an advocate for children living with autism and other learning disabilities.
Autism is one of the lesser-known disabilities. It is therefore incredibly important that we honour Autism Awareness Day on 2nd April, to bring the lived experience of autistic people to the wider world.
But what is autism?
Autism is a developmental disorder that affects how people interact with others, communicate, learn and behave. It impacts how a person perceives others and socializes with them. It is often characterized by:
- Repetitive and restricted movement
- Rocking back and forth
- No eye contact
- Not responding to their name when spoken to
- Sensory overload – getting upset if they do not like certain tastes, smells or sounds
- Having difficulty staying and falling asleep
You may often hear the term ‘Autism Spectrum Disorder’. The term “spectrum” helps to convey that autistic people have different degrees of severity, and it is a way of describing the varying symptoms from person to person.
What are the challenges?
Raising a child with autism is very challenging because autism affects both the autistic child and those around them. Parents/guardians and their children bear the brunt of the isolation, stigma and judgement associated with autism. Sadly, it is hard for people living with autism and other learning disabilities to be accepted and tolerated by the society, largely due to lack of awareness.
In South Sudan, a lack of awareness and understanding about Autism Spectrum Disorder affects many families, communities and even health care professionals. Often, people with autism receive misdiagnoses or delayed diagnoses of this condition, further isolating families and hindering access to support and resources.
Cultural beliefs surrounding autism continue to be a challenge. In some communities, autism is believed to be punishment or curse resulting from unpaid dowry or a mishandled marriage process. Social exclusion and discrimination against autism often prevents families from seeking help and support, which further exacerbates the isolation and difficulties they already face.
The lack of a legal and policy framework is another challenge hindering service and support to autism. There is generally a lack of physical infrastructure and institutions that can address this special need. There only exists one special needs school, Usratuna, which again only provides support for physical disabilities
Call for Action!
There is therefore need for concerted efforts to address the aforementioned challenges and to create a more inclusive and supportive environment for autistic children and their families in South Sudan. Together we can raise awareness, promote acceptance and ensure that every individual with autism has the opportunity to reach their full potential.
At Beyond Love Foundation, our mission is simple yet profound: to make lasting impact on the lives of autistic children and their families across South Sudan.
Our commitment to this cause is unwavering, grounded in three core pillars:
- Providing essential services,
- Implementing early intervention programs
- Creating awareness.
Today, on World Autism Awareness Day, I invite you to support our campaign to help us ensure that every child with autism in South Sudan receives the support and services they need to thrive.
The need for additional funding is urgent to sustain and expand our reach. If you would like to support the campaign and make a difference to our community, you can reach out to me on e-mail: yarchristine@gmail.com.
Thank you for considering supporting our cause and being a beacon of hope for those in need.
Girls’ Education South Sudan (GESS) continues to mainstream disability inclusion in all its activities. GESS through the Pupils’ Attendance Registers, uses the Washington Group Questions (WGQs) to identify different types of disabilities to improve support to children. Intellectual disabilities are some of the most difficult to identify amongst schoolchildren. This has been improved through the introduction of the WGQs
Yar Makuei Manyiel
Founder Beyond Love
Categorised in: Disability Inclusion, Featured