When war erupted in Sudan in April 2023, it began in the capital, Khartoum, and then spread to various unknown locations. Many people died, while others faced many obstacles, particularly those who were trapped inside, including a large, neglected population: individuals with autism.
Umm Ahmed, a mother of two boys with autism, faced a tragic situation when she left Khartoum with them in search of peace and stability. "I have been struggling to explain to my sons how life has changed since we left our home," said Umm Ahmed.
She added, "I had to explain autism to others too, hoping they would accept my children, whom I pray endlessly, pleading with fate to keep them alive."
The autism spectrum is a universe filled with different galaxies. It includes nonverbal children like Ahmed, Umm Ahmed's eldest son, as well as others who are highly functional and have successfully attended university. However, many of them may still struggle with social communication skills and feel compelled to speak a foreign language.
Umm Ahmed said, "Ahmed's symptoms were apparent from birth, but his father refused to accept the possibility that his son has autism." She added, "Driven by emotion, he tried to escape the terrifying truth. That denial delayed Ahmed’s diagnosis for years. His father worked in the health sector, and he was supposed to be more prepared and accepting."
Eventually, after lengthy discussions and struggles, Ahmed's father agreed to take him to the doctor when he was five years old. The doctor confirmed his diagnosis of autism. "I thought I was prepared, but hearing the doctor say it, it shattered me. Ahmed was my firstborn," she said.
She adds: "After the doctor confirmed it, we had to abandon our old way of thinking and start a unique long journey that revolves around caring for Ahmed, who is different from peers and all of us." she said, "It is an endless journey for a mother of two children living with this mystery: autism."
Ahmed, the eldest son, struggles the most, while his sibling is calmer and has a milder condition. This journey became extremely painful and uniquely challenging after the outbreak of war in Khartoum between the army and the Rapid Support Forces in April 2023.
Umm Ahmed explains, "Before the war, Ahmed attended a center for individuals with autism in Bahri city. I regularly accompanied him to gain insight into autism and learn how to help him." She mentions, "We kept going to the center until Ahmed turned 10. I learned to assist him through structured, intensive training. As the years passed, he showed improvement, yet he never spoke."
Contrary to the common classification of autism as a disease, it is neither a disease nor a psychological disorder. Instead, it is a developmental disorder that affects behavior, social and language skills, as well as the ability to interact and communicate with others. To avoid defining a person by their diagnosis, the use of person-first language, "a child with autism" or "on the autism spectrum," is sometimes recommended instead of labeling the child "autistic." Early intervention through behavioral, occupational, and speech therapy is crucial for integrating a child into society, as it enhances their social, language, and communication skills.
According to unofficial statistics, about 200,000 children with autism are facing hardships due to the war and the closure of special needs centers in the capital, Khartoum. Additionally, there is no accurate data on the existence of such centers in other states.
The mother continues, "The war began in Khartoum in mid-April, we were in our home at Al-Halfaya town, near the bridge connecting to Omdurman. The war came fast and hard. The sounds of gunfire, explosions, and airplanes were extremely irritating for someone with autism, like Ahmed. He would hide under the bed, making muffled sounds whenever he heard the bullets. Later, he began drawing the scenes he witnessed."
Many children on the spectrum experience heightened sensitivity to sound, which can cause physical pain when they are exposed to loud or unfamiliar noises.
I learned from Umm Ahmed that the war and violence had caused her children to experience noticeable depression and anxiety. This was especially true for Ahmed, who used to explore new places through constant movement and pacing back and forth. His behavior led to significant social issues that nearly cost him his life.
Umm Ahmed stated, "Because of his special condition and our concern that others might not accept him, we chose to stay home instead of fleeing, hoping the situation would rapidly improve and that the warring parties would reach a political solution, but that did not happen."
After 70 days, most families in our neighborhood had left, and we found ourselves alone, along with just two other families. Suddenly, our home transformed into a makeshift clinic. It became a destination for the wounded from distant neighborhoods, such as Al-Haj Yousif and Al-Droshab, who sought my husband's services. Ahmed witnessed blood flowing from the injured, heard their screams, and watched as his father treated the heavy bleeding.
One evening, their house came under direct fire. She said, "The only thing that protected us was our concrete roof. That’s when we knew we had to flee. We left for Wad Madani, in Al-Gezirah state."
“The struggle continued until we reached Wad Madani," she said. "I feared that people wouldn’t accept Ahmed's condition, and that’s exactly what happened. Eventually, we sought refuge in a shelter for people with disabilities, operated with the help of the Red Crescent."
The situation at the shelter was tough for the family, particularly for individuals with disabilities and those with autism.
It was located inside a school. The family was assigned a small office room to live in. However, even that fragile haven didn’t last. Nine months later, fighting reached Wad Madani. Rapid Support Forces entered the city, and gunfire, along with stray ammunition, found their way into the shelter.
She says: Somehow, we were evacuated by a large tractor to the village of Darwish near Wad Madani. The new shelter was another school, but this one had no walls. "We had nothing. Just the shade of trees," she said. "That’s when the real suffering began."
In Darwish, Ahmed's behavior became increasingly agitated. He wandered often, driven by anxiety, resembling a dervish, “a whirling dervish,” searching for something. The lack of awareness about autism leads people to make judgments about the lives and nature of those with autism. Umm Ahmed says, "One night, Ahmed was aimlessly wandering. He went to another family that was sharing the shelter with us. The father, seeing Ahmed’s mature appearance, thought he intended to harass his family, so he grabbed a stick and chased him, intending to harm him! We barely managed to save him."
After this incident, Umm Ahmed would sleep with her son under a tree, tying Ahmed’s leg to her own so she could feel if he moved. After 60 days of this exhausting situation, we managed to leave Darwish and move to another shelter center in Kassala State, eastern Sudan. However, tragedy nearly struck again there. Ahmed wandered off once more, this time into the home of the shelter’s security guard. The man believed he was a threat and almost killed him. "Only divine intervention saved his life," said his mother.
The constant displacement had another cost: Ahmed missed two full years of school. Recently, the family found a school in Kassala that offers part-time education, and he is now attending three days a week. However, the future remains uncertain. "Our journey isn’t over," said the mother. "The authorities here have told us they plan to close down the shelter we live in!"
