When Shaima Al Tamimi's little brother Mohammed seemed hyperactive as a small child, the family simply assumed that it was because he was an overly energetic boy. But as he went from school to school, it became clear that something else was very wrong.
Fourteen years on, Mohammed Al Tamimi is a tall, powerful 18-year-old with profound autism, a condition barely encountered in Emirati society when he was a child, and still little understood - though now far more often diagnosed.
"We didn't know what autism was," says Shaima, whose family is Yemeni and has been in Abu Dhabi for decades. "Obviously we found out because my brother was diagnosed when he was four or five. He was a very hyper kid, always happy and giggly, and because he was the first boy in the family we just thought that was how boys are."
Although there are still no official figures for autism rates in the UAE, in the US one in 88 children is believed to be somewhere on the autism spectrum.
Centres such as the Dubai Autism Centre and Autism UAE offer the early intervention that can help autistic children function better, but Shaima believes there is still little awareness in the UAE of what autism means and how to diagnose it.
That is one reason that her family, including her sister Sana and their father Saleh Al Tamimi, is taking part in a documentary on autism being made by the local filmmakers Amal Al Agroobi and Hana Makki. The film, called The Brain that Sings, also features a 6-year-old Emirati, Khalifa Al Ali, who is severely autistic, and his mother, Fauzia Al Ali. It aims to document not only the families' experiences of living with autism, but also a three-month process during which Khalifa and Mohammed undergo intensive music therapy.
Al Agroobi and Makki are among filmmakers using the new regional crowdfunding site Aflamnah.com to finance their work.
"We're already seeing benefits by having our crowdfunding video out there," says Makki, who four years ago changed careers from hospitality to film production. "So many people are talking about it; we had a lovely story with the mother of Khalifa: after the crowdfunding video came out, her friend of 17 years had called her up and said, 'I didn't know you had an autistic son', and she said watching that video was 'like watching a mirror, because I too have an autistic son'."
Al Agroobi, who studied neuroscience and worked in a UAE hospital before training in filmmaking for six months at ImageNation, says: "Neither of them knew that they both had autistic sons. To be able to relate to each other and to know that they were both going through the same thing was very comforting. What Hana and I are trying to do is to bring down that stigma and show that it's not a shame for them to show their story to the world."
That perceived shame or social stigma of mental and cognitive disorders or other special needs in the UAE is one reason, says Makki, that awareness of autism is so low, but once the short film on Aflamnah.com started being emailed around, the pair were inundated with responses. "People are pretty much screaming to get their stories out, and we've been inundated by people saying 'Why don't you do my son, my brother?'" she says.
Indeed, Khalifa's mother Fauzia kicked off the idea, says Al Agroobi.
"One of my friends sent an email from a woman saying: 'My son is autistic; I wish someone would make a film about him.' Everyone believes that no one is willing to speak about a disorder, especially if they have a child that has a disability. But then I spoke to Fauzia, and later on to my friend Shaima, and she said: 'My brother's autistic.'"
Even after casting off those social constrictions, though, it is no easy process for the families involved.
"We had a chat with them to say, look, we are going to be part of your life for the next six months," says Al Agroobi. "We are going to be in your house, we're going to be filming you guys all day, all night, in your most intimate moments. And to let strangers in and to get so personal and open up their lives, their homes, their secrets to the general public, especially here where it's such a big deal, is a very brave thing to do."
For Shaima, it will all be worth it. Certainly she wants to see whether her brother can be made calmer and happier. But she also wants the society she lives in to understand autism so it can be tackled earlier, and to remove any stigma.
"When Mohammed was diagnosed, it was very, very hard to find out more and even seek professional help," she says. "We had to explain it to people from scratch. I don't think people even know about it now.
"It's not just for my brother. It's for all the people who are living with autism."
The Brain that Sings is still in the crowdfunding stage. To donate visit Aflamnah.com/en/the-brain-that-sings/
