Autism report targets Somali community
While rates of autism are seemingly disproportionately high among British Somali people, a new study has revealed that more than half of families do not fully understand the condition, and many face huge barriers to receiving treatment. The report by charity Autism Independence, which supports British Somali families in Bristol, and Healthwatch Bristol paints a picture of the difficulties families face in coping with their child’s autism.
Founder of Autism Independence Nura Aabe (see tinyurl.com/y9qprq77), and author of this research, has been active in trying to raise awareness of the condition in Bristol, as well as supporting families in the British Somali community to understand and cope with autism.She interviewed 50 of the families she works with and made recommendations to health and social care providers based on her findings.
Aabe’s previous research uncovered some initial concerns, with many British Somali parents not fully understanding autism, feeling confused at the lack of physical symptoms, and struggling to find help and support. Aabe also created a one-woman play, Yusuf Can’t Talk, in collaboration with theatre group Acta, to help portray her own experiences of having a child with autism.
Through her interviews Aabe found 40 per cent of families said they did not understand what autism was; 8 per cent thought it was an illness or mental illness while 10 per cent thought it was a term for being ‘different’ or having language problems. This lack of understanding, Aabe writes, was the biggest problem for families leading to other barriers in seeking help.
Many also spoke of a general mistrust of service providers; half didn’t have a social worker out of fear their child would be taken away. Just over 75 per cent were not accessing any social care support. A majority of families said they were happy with healthcare services, but many spoke of a need for better communication. Close to 85 per cent of parents said they felt their being Somali significantly affected their access to services, largely due to language and cultural barriers.
Aabe recommends, among other things, that healthcare professionals need a better understanding of the challenges faced by Somali families affected by autism. She also suggests that the community needs a better understanding of the condition, and working alongside mosques should help clarify the role of faith in this.
A report from Swedish neurologists, published on 1 August, says the prevalence of autism spectrum disorders in Somali children aged 7 to 17 years in Stockholm is nearly four times higher than in non-Somali children.
“Somali parents here call it ‘the Swedish disease,ʼ” says Elisabeth Fernell, a pediatric neurologist at the Karolinska University Hospital in Stockholm and lead author of the Swedish report. Based mostly on discussions with teachers and clinicians at the three autism habilitation centers in Stockholm County, “Weʼve had a suspicion that itʼs more common in children with a Somali background for years,” she says.
Sunshine cure:
Fernell and others say their observations could have a solid scientific hypothesis: lack of vitamin D, a hormone thatʼs essential for brain development and made predominantly in response to sun exposure.
Because dark-skinned people make vitamin D much more slowly than fair-skinned people, Somalis who move to northern latitudes ― such as Sweden or Minnesota ― would be especially susceptible to vitamin D deficiency, the theory goes. Somalis, who are predominantly Muslim, might be particularly susceptible because their clothes typically cover most of their skin.
Vitamin D is the chemical precursor of a steroid hormone that directly affects the expression of more than 2,000 human genes. The vast majority of vitamin D in the body is produced when the skin is exposed to ultraviolet light.
“Studies show that Africans need to stay six times longer in the sun compared to Caucasians to produce the same amount of vitamin D,” says psychiatrist Mats Humble, who has suggested vitamin D deficiency as the explanation for higher numbers of autism among Somalis in Sweden.
John Cannell, a psychiatrist at Atascadero State Hospital in California and director of the nonprofit Vitamin D Council, in August also linked vitamin D deficiency to autism, arguing that the increase in autism prevalence in the past two decades correlates with the increasing recommendations from the medical community to avoid the sun. “[The link] explains every known epidemiological fact that I’m aware of about autism,” Cannell says.
Along with explaining apparent differences in ethnic populations, Cannell says, the theory explains why people with autism have reduced bone thickness (vitamin D plays a pivotal role in calcium production and bone growth); why they’re often born in March (their mothers were exposed to less sun during a critical time of pregnancy); and even why autism is more prevalent in boys than girls (testosterone inhibits vitamin D production).
He also cites 2004 results from Australian researchers, who found that low vitamin D levels in a rat embryo lead to increased brain size ― which is sometimes reported in children with autism ― and cellular growth and an altered brain shape.
While rates of autism are seemingly disproportionately high among British Somali people, a new study has revealed that more than half of families do not fully understand the condition, and many face huge barriers to receiving treatment. The report by charity Autism Independence, which supports British Somali families in Bristol, and Healthwatch Bristol paints a picture of the difficulties families face in coping with their child’s autism.
Founder of Autism Independence Nura Aabe (see tinyurl.com/y9qprq77), and author of this research, has been active in trying to raise awareness of the condition in Bristol, as well as supporting families in the British Somali community to understand and cope with autism.She interviewed 50 of the families she works with and made recommendations to health and social care providers based on her findings.
Aabe’s previous research uncovered some initial concerns, with many British Somali parents not fully understanding autism, feeling confused at the lack of physical symptoms, and struggling to find help and support. Aabe also created a one-woman play, Yusuf Can’t Talk, in collaboration with theatre group Acta, to help portray her own experiences of having a child with autism.
Through her interviews Aabe found 40 per cent of families said they did not understand what autism was; 8 per cent thought it was an illness or mental illness while 10 per cent thought it was a term for being ‘different’ or having language problems. This lack of understanding, Aabe writes, was the biggest problem for families leading to other barriers in seeking help.
Many also spoke of a general mistrust of service providers; half didn’t have a social worker out of fear their child would be taken away. Just over 75 per cent were not accessing any social care support. A majority of families said they were happy with healthcare services, but many spoke of a need for better communication. Close to 85 per cent of parents said they felt their being Somali significantly affected their access to services, largely due to language and cultural barriers.
Aabe recommends, among other things, that healthcare professionals need a better understanding of the challenges faced by Somali families affected by autism. She also suggests that the community needs a better understanding of the condition, and working alongside mosques should help clarify the role of faith in this.
A report from Swedish neurologists, published on 1 August, says the prevalence of autism spectrum disorders in Somali children aged 7 to 17 years in Stockholm is nearly four times higher than in non-Somali children.
“Somali parents here call it ‘the Swedish disease,ʼ” says Elisabeth Fernell, a pediatric neurologist at the Karolinska University Hospital in Stockholm and lead author of the Swedish report. Based mostly on discussions with teachers and clinicians at the three autism habilitation centers in Stockholm County, “Weʼve had a suspicion that itʼs more common in children with a Somali background for years,” she says.
Sunshine cure:
Fernell and others say their observations could have a solid scientific hypothesis: lack of vitamin D, a hormone thatʼs essential for brain development and made predominantly in response to sun exposure.
Because dark-skinned people make vitamin D much more slowly than fair-skinned people, Somalis who move to northern latitudes ― such as Sweden or Minnesota ― would be especially susceptible to vitamin D deficiency, the theory goes. Somalis, who are predominantly Muslim, might be particularly susceptible because their clothes typically cover most of their skin.
Vitamin D is the chemical precursor of a steroid hormone that directly affects the expression of more than 2,000 human genes. The vast majority of vitamin D in the body is produced when the skin is exposed to ultraviolet light.
“Studies show that Africans need to stay six times longer in the sun compared to Caucasians to produce the same amount of vitamin D,” says psychiatrist Mats Humble, who has suggested vitamin D deficiency as the explanation for higher numbers of autism among Somalis in Sweden.
John Cannell, a psychiatrist at Atascadero State Hospital in California and director of the nonprofit Vitamin D Council, in August also linked vitamin D deficiency to autism, arguing that the increase in autism prevalence in the past two decades correlates with the increasing recommendations from the medical community to avoid the sun. “[The link] explains every known epidemiological fact that I’m aware of about autism,” Cannell says.
Along with explaining apparent differences in ethnic populations, Cannell says, the theory explains why people with autism have reduced bone thickness (vitamin D plays a pivotal role in calcium production and bone growth); why they’re often born in March (their mothers were exposed to less sun during a critical time of pregnancy); and even why autism is more prevalent in boys than girls (testosterone inhibits vitamin D production).
He also cites 2004 results from Australian researchers, who found that low vitamin D levels in a rat embryo lead to increased brain size ― which is sometimes reported in children with autism ― and cellular growth and an altered brain shape.
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