Hiiraan Online

A Leicester mum is on a mission to raise awareness of autism, especially within the Somali community. Samia Ali and her husband Hashim Duale founded Daryeel Autism, which translates to ‘care with compassion’, in order to break the stigma surrounding the condition.

Their son Ismail Duale, 22, was diagnosed with autism at the age of eight after years of being non-verbal. At the time of his diagnosis, Samia felt lost and completely unaware of what the condition entailed.

She said: I had never heard of autism or met anyone with it. At 18 months, my son stopped saying the words that he used to say, but when I’d go to professionals, they said that it was something he would grow out of and completely dismissed me.”

As a mother, Samia knew that something was not right, and she continued to fight for her son. “When he was two years old, they started the process of checking his hearing.

"We visited paediatricians and they’d give him toys to observe him, but the process took so long, and I kept hoping that they would be able to tell me what was going on. But they never did.”

After a gruelling six-year journey, Ismail finally received his diagnosis, but Samia said she was left in the dark about what to do next. She said: “There were no services to refer me to, there was no information readily available to me, or a signpost for early intervention - I didn’t even know what early intervention meant.”

Despite feeling Lost, Samia did her best to find a new normal and Ismail grew up having a happy life, filled with love and support. But the pandemic threw a spanner in the works for the family.

She said: “Ismail had such a hard time during lockdown, because there were so many changes happening, with no time to process. He couldn’t attend college, because the college couldn’t meet his needs, but Ismail is driven through a routine, and Covid turned everything upside down.”

“He had so much anxiety, to the point where he would only sleep for about four hours out of 24, he wasn't eating so he lost so much weight and he began developing behaviours that he didn’t have before. But I was lucky because I’d built an awareness of the services out there, and my husband used to work for the NHS so we knew where to go for help.”

Samia began to think about people - specifically in her native community that were going through the same things as her and her son, and that is when she decided to create Daryeel. "If I tried to translate autism into the Somali language, there is no word for it," she said.

“Unfortunately, there is a stigma that comes with having a child that has special needs, especially when it's not visible. Because we have not much information about it.

"We have no knowledge about it. People will think if a child is having sensory overload or a meltdown, it must be because we didn't discipline our child or we teach them right or wrong.”

“And it’s because of this that we wanted to create something that takes away that shame and highlights all of the services that they can have access to, which can help them support their child. Asking for help is not an easy thing to do, but it is vital to know what is out there.”

Daryeel Autism's motto is to ‘educate, empower and embrace’. The 'community interest' company has held meetings for residents to meet with health professionals such as psychiatrists, speech therapists to get the best possible advice on how to care for their children.

All meetings are then translated into other languages, to ensure people who have attended have a full understanding of what has been discussed, and can feel comfortable to ask questions. Samia also utilises social media to spread awareness of autism and signposts her followers to services.

Daryeel has received an overwhelming response from Leicester residents, and from citizens across the UK. Samia and Hashim said that they hope their foundation will continue to support people not just from the Somali community, but from all walks off life, and that its legacy will continue, even after they are gone.

For more information, or if you would like to receive support from Daryeel, visit their Facebook page online here .