Leicester’s Samia Ali regularly speaks to hundreds of parents all over the world, about her experience of raising a child with Autism.
Her mission, through the organisation ‘Daryeel Autism,’ is to raise awareness of the condition, which is largely misunderstood – especially among members of her own Somalian community…
It was 2020 when Samia Ali and her husband Hashim set up ‘Daryeel Autism,’ an organisation based in the St Matthews area of Leicester. Its mission is to ‘educate, empower and embrace’ those affected by Autism.
The inspiration behind it is their 22-year-old son Ismail (pictured), who was born with Autism – a condition characterised largely by problems with social communication and interaction.
Although he was totally non-verbal throughout his early years, doctors were reluctant to “label” him with Autism as a child, and he wasn’t diagnosed until the age of eight.
“Before I had Ismail, I knew nothing about Autism. All I knew was that he was not talking.
“When he wanted something, he’d just take my hand and drag me and point to stuff, but no words would come out of his mouth,” Samia told Pukaar.
“Obviously I was concerned, but when I took him to the doctors, they assured me that nothing was wrong and they didn’t want to label him,” she continued.
“He didn’t have the typical signs of Autism. Although he wasn’t speaking, Ismail had eye contact and so he went under the radar until he was eight.”
Due to her son’s relatively late diagnosis, Samia is keen to help other parents speed up the diagnostic process, so that they can access support and ‘early intervention.’
It’s something which is “essential” to ensuring the best possible start for an Autistic child, she says.
However, waiting lists are long and can stretch out over three years.
“That’s three years that have been wasted instead of the child being helped,” said Samia.
Through ‘Daryeel Autism,’ she aims to raise awareness of Autism, particularly within the Somalian community, where there is said to be a “significant lack of understanding.”
There is also a stigma attached, and it’s something which is not often talked about, or even acknowledged.
“There isn’t a word for Autism in Somali, so it can be a very difficult time for families when they find out that their child is diagnosed and English isn’t their first language,” revealed Samia.
“If I say to my Mum and Dad, ‘my son’s been diagnosed with Autism’, they don’t even know what that means.
“For them to understand, I have to give a long explanation, and even then they don’t get it.
“It’s complicated – unknown to many and almost taboo. Even the people who have a child with Autism, they don’t share and they don’t talk about it because of the stigma.”
Samia and her husband are currently in the process of registering ‘Daryeel Autism’ as a charity.
The Somali word ‘Daryeel’, means ‘to care with compassion,’ and that is exactly what the couple intend to do through their organisation.
To find out more or to help with the cause, visit: www.daryeelautism.co.uk
By Louise Steel