Community activists in the Somali community say that autism is often not discussed openly and even kept hidden. Language barriers, cultural stigma, and denial can make it difficult for parents to share the challenges they face while raising their autistic children.
Growing up Somali myself, autism was rarely mentioned. It was often misunderstood as a sickness or possession, something children needed to recover from. Some parents still take their children to the mosque for Quran Saar, a practice involving the reading of the holy book, in the hopes of a cure.
There wasn’t even a word for autism in Somali until recently. Anisa Hagi-Mohammed, a Somali-American mother of two autistic children, created the term “Maangaar,” which means “unique mind.” She says this was an effort to change how the community perceives autism and to start a new conversation about it.
Barriers to Diagnosis and Support
Somali parents say they face many challenges in obtaining an autism diagnosis for their children. Language barriers make it difficult for parents to articulate their concerns to healthcare professionals. Additionally, cultural stigma around mental health and developmental disorders often prevents parents from seeking help. There is also a sense of denial; parents might dismiss their child’s behaviours as a temporary phase rather than recognising them as signs of autism.
A study by the University of Cambridge indicates that about one in 57 children in the UK is on the autism spectrum. However, significant racial and ethnic disparities exist in diagnosis and outcomes.
Further research has found that white children are diagnosed earlier and more frequently than their peers from other backgrounds. This can lead to better support and interventions.
In contrast, black children, including those from Somali communities, are 26% more likely to be autistic. They often experience more severe symptoms due to delayed or missed diagnoses.
Efforts to Raise Awareness and Change Perceptions
Individuals like Abdikhdir, a Somali father now living in Sweden, are using social media to raise awareness about autism. Through his TikTok page, he shares his experiences and challenges in parenting an autistic child. Despite initially facing stigma and pressure from his community to hide his son, Abdikhdir chose to use his platform to educate others and celebrate his child’s uniqueness. His approach contrasts with the embedded cultural view that autism should be kept hidden.
Abdikhdir shared his experience of discovering that his son had autism, saying he faced denial from family members. He had to work hard to get them to accept it. When he began posting about his son on TikTok, some relatives urged him to keep his child hidden. Despite the difficulties, Abdikhdir hopes to use his social media platforms to educate others about autism and encourage them not to hide their children.
Religion plays a significant role in the lives of many Somali families. Regular mosque attendance and religious education are common practices. Some parents believe that Islamic scriptures can cure autism, a belief rooted more in cultural traditions than religious doctrine.
Anisa Farah opening up about her experience as a mother and founder of charity
Community Initiatives and Advocacy
Anisa Farah founded London’s first Somali Autism Awareness charity in 2009. Her work provides valuable insights into the community’s struggles. Motivated by her own experiences after her second oldest child was diagnosed with autism, Anisa aims to educate other Somali parents about the condition. She highlights the trauma that practices like Quran Saar can inflict on autistic children, advocating instead for more informed and compassionate approaches to care.
I spoke with Suad Ismail, a spokesperson at Al-Furqan Mosque, t understand why many believe Islamic scriptures can cure their child’s autism. Suad explained that this belief stems from ignorance and a lack of knowledge.
Suad Ismail wants the Somali community to know that religious practice cannot ‘cure’ autism
While the Quran can provide comfort in times of need, it cannot cure autism. She emphasised the need for more support in overcoming language barriers and for greater cultural awareness among healthcare professionals.
Addressing autism in the Somali community requires a multifaceted approach. Initiatives like the introduction of the term “Maangaar,” the efforts of social media influencers like Abdikhdir, and the work of advocates like Anisa Farah are crucial steps in breaking the silence and reducing stigma.
Supporting autistic Somali children means overcoming language barriers, challenging cultural misconceptions, and promoting early diagnoses. By fostering a more open dialogue and providing better resources, the Somali community can make strides in supporting families affected by autism.
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HeadlineMaangaar, the first Somali word for autism
Short HeadlineMaangaar, the first Somali word for autism
StandfirstCommunity activists and religious leaders are raising awareness of neurodivergence
Community activists in the Somali community say that autism is often not discussed openly and even kept hidden. Language barriers, cultural stigma, and denial can make it difficult for parents to share the challenges they face while raising their autistic children.
Growing up Somali myself, autism was rarely mentioned. It was often misunderstood as a sickness or possession, something children needed to recover from. Some parents still take their children to the mosque for Quran Saar, a practice involving the reading of the holy book, in the hopes of a cure.
There wasn’t even a word for autism in Somali until recently. Anisa Hagi-Mohammed, a Somali-American mother of two autistic children, created the term “Maangaar,” which means “unique mind.” She says this was an effort to change how the community perceives autism and to start a new conversation about it.
Barriers to Diagnosis and Support
Somali parents say they face many challenges in obtaining an autism diagnosis for their children. Language barriers make it difficult for parents to articulate their concerns to healthcare professionals. Additionally, cultural stigma around mental health and developmental disorders often prevents parents from seeking help. There is also a sense of denial; parents might dismiss their child’s behaviours as a temporary phase rather than recognising them as signs of autism.
A study by the University of Cambridge indicates that about one in 57 children in the UK is on the autism spectrum. However, significant racial and ethnic disparities exist in diagnosis and outcomes.
Further research has found that white children are diagnosed earlier and more frequently than their peers from other backgrounds. This can lead to better support and interventions.
In contrast, black children, including those from Somali communities, are 26% more likely to be autistic. They often experience more severe symptoms due to delayed or missed diagnoses.
Efforts to Raise Awareness and Change Perceptions
Individuals like Abdikhdir, a Somali father now living in Sweden, are using social media to raise awareness about autism. Through his TikTok page, he shares his experiences and challenges in parenting an autistic child. Despite initially facing stigma and pressure from his community to hide his son, Abdikhdir chose to use his platform to educate others and celebrate his child’s uniqueness. His approach contrasts with the embedded cultural view that autism should be kept hidden.
Abdikhdir shared his experience of discovering that his son had autism, saying he faced denial from family members. He had to work hard to get them to accept it. When he began posting about his son on TikTok, some relatives urged him to keep his child hidden. Despite the difficulties, Abdikhdir hopes to use his social media platforms to educate others about autism and encourage them not to hide their children.
Religion plays a significant role in the lives of many Somali families. Regular mosque attendance and religious education are common practices. Some parents believe that Islamic scriptures can cure autism, a belief rooted more in cultural traditions than religious doctrine.
Anisa Farah opening up about her experience as a mother and founder of charity
Community Initiatives and Advocacy
Anisa Farah founded London’s first Somali Autism Awareness charity in 2009. Her work provides valuable insights into the community’s struggles. Motivated by her own experiences after her second oldest child was diagnosed with autism, Anisa aims to educate other Somali parents about the condition. She highlights the trauma that practices like Quran Saar can inflict on autistic children, advocating instead for more informed and compassionate approaches to care.
I spoke with Suad Ismail, a spokesperson at Al-Furqan Mosque, t understand why many believe Islamic scriptures can cure their child’s autism. Suad explained that this belief stems from ignorance and a lack of knowledge.
Suad Ismail wants the Somali community to know that religious practice cannot ‘cure’ autism
While the Quran can provide comfort in times of need, it cannot cure autism. She emphasised the need for more support in overcoming language barriers and for greater cultural awareness among healthcare professionals.
Addressing autism in the Somali community requires a multifaceted approach. Initiatives like the introduction of the term “Maangaar,” the efforts of social media influencers like Abdikhdir, and the work of advocates like Anisa Farah are crucial steps in breaking the silence and reducing stigma.
Supporting autistic Somali children means overcoming language barriers, challenging cultural misconceptions, and promoting early diagnoses. By fostering a more open dialogue and providing better resources, the Somali community can make strides in supporting families affected by autism.
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