Child stars of stage and film fighting autism stigma

It was a show that sceptics said would be impossible to stage. Nothing like it had ever been done before in the UAE. The scope for things going wrong, warned experts, was massive.

Preparations and rehearsals were punctured by the stars throwing tantrums, falling out, storming off, not turning up and forgetting their lines. At one point, video footage shows one lead hitting another in the stomach, albeit by accident. “My kidneys,” gasps the injured party clutching his tummy.

Even the organisers seemed doubtful this particular show could go on. With just three weeks left to opening night, the musical director Robert Millner admitted with resignation, “the chances of us pulling this off are slim.”

Not long after, comedy director Mina Liccione intimated that they’ll do their best – universal code for: “don’t expect much”.

Yet what unfolded on a small stage in an Abu Dhabi school – a simple musical comedy performed in front of fewer than 100 audience members – was arguably a theatrical triumph as great as the multimillion-dirham spectacles that come to this country.

It might just also have more of a lasting impact on UAE society than those plays, too. For the stars of the show – 10 children of different ages ranging from four to 17 and nationalities – are all autistic.

Just getting them to interact with each other was a massive challenge. Getting them to perform on stage as part of a team – in just 12 weeks, no less – was a feat even many of their parents thought impossible.

“On the first day it was just...chaos,” remembers Hana Makki, one of the people behind this most unusual of projects. “Children were screaming, running about, crying.

“I just thought there is no way this is going to work; this is never going to get done.”

All the troubles and triumphs of staging that show were captured in a documentary – equal parts heart-wrenching and heart-warming – which will be premiered at Emirates Palace as part of the Abu Dhabi Film Festival this month.

And with the film, As One, pencilled in for a 2015 cinema release date and TV airing, the success of those youngsters is set to become both a beacon of hope for parents of autistic children and a key tool in raising awareness about this condition among the rest of us...

So, how did 10 children with autism – a disorder largely characterised by difficulty in communicating and forming relationships – come together to put on a show that just might help re-educate the UAE about their condition? Not easily, is the answer. There were tears and fears before eventual cheers.

The Autism Project, to give it its full name, was actually first initiated last summer by Shaikha Shamsa Bint Mohammad Bin Zayed Al Nahyan. Aware of figures that suggest one in every 50 youngsters in the UAE may have the condition, the royal wanted to raise understanding, reduce associated stigmas and drive home the message that early diagnosis is key to helping these children lead independent lives. 

Abu Dhabi based film-makers Image Nation was asked to produce a documentary to do all the above; and so producers there decided to create an hour-long piece following 10 autistic youngsters as they put on a musical for an audience in the capital city.

They hoped the challenging experience of these youngsters and their families would show both the difficulties of living with autism, as well as the ultimate normality of those who suffer from the illness. “The idea was actually based on something that had been done in America,” says Hana, one of two producers who worked on the film. “Autism The Musical was a huge success over there. It’s had a huge impact on how people think about the condition in the US. We felt something similar could really work here.

“The films are completely different in the end but we hope for similar successful results.”

Some 65 families from across the country – who heard about the project at specialist schools and centres – put their children forward to appear in the play, called Colours Of The World, and the accompanying documentary. Then producers narrowed that down to a final 10.

“We were also aware that these kids would be ambassadors for autism in the UAE,” explains Hana.

“So we wanted them to come from across the autistic spectrum and from all age groups. We wanted to show how different this condition is with different people.”

In the end, the 10 they picked ranged from four to 17 years old, lived across the country, and came from around the world.

Their condition manifested itself in a number of ways. One, Nikhil Shah, does not speak; another, Gabrielle Antwi Darkwa, is distressed by bright colours; and a third, Asher Boog Thompson, struggles badly without routine.

Show rehearsals took place over 12 Saturday afternoons last year. These sessions initially constituted of general workshops in dance, music and comedy before each youngster, according to their individual talent, was assigned a role in the play.

The deep baritone of 14-year-old Mohamad Jawhar Mohammad Dawood, for example, meant he became a lead singer. Little Abdulla Kamalboor’s gift for comic timing, meanwhile, resulted in the 10-year-old being one of two narrators. The script, directions and music, however, were all specially written by six theatre volunteers who oversaw the whole thing: directors Mohammad Younes and Dana Dajani, comedy directors Mina Liccione and Ali Al Sayed, dance instructor Philip Rachid and musical director Robert Millner.

And while that first session was, as Hana says, “chaos”, things soon started to settle down.

By week three, an element of order – much needed by children with autism – had been established by using activities like a ‘hello’ song to start the day. By week five, the youngsters had started to take to their roles. By week eight, it was realised with some surprise, these kids who struggled so much socially were beginning to form deep bonds over a common goal.

“When they started coming in saying ‘hi’ to each other, it was a big deal,” says Hana. “These aren’t kids that will naturally do that.

“Even the word ‘autism’ comes from ‘autonomy’, so to have them working as a team was massive.”

Sharifa Yateem, an applied behaviour analysis therapist based at the New England Center For Children, in Abu Dhabi, was one of the experts who supported the project, attending sessions in a support capacity every week.

“We need to stress this was not therapy,” she tells Friday. “The primary aim of the show was to show to the wider public that these kids with autism can, with the right teaching and processes, take a place in society.

“But so many skills were learned incidentally that you did see them develop. The importance of teamwork or of not being distracted when you have a goal were really established – all while they were enjoying themselves. There were friendships built up, too.

“What that suggests is sharing this creative experience had real benefits for the children involved, such as increased confidence, sociability, imitation skills and focus.

“And that shows that if more community activities for children with autism can be provided, then those kids may be more likely to take on the skills that will help them lead independent lives. It’s not easy, of course. When I was first asked to do this my first question was ‘are you serious?’, because it was such a challenge. I wasn’t one of those people who thought it would be impossible but I knew it would be hard work.”

The parents of the children involved felt something similar. In many ways they are as much the stars of the resulting documentary as the children; heartbreak and heartfelt joy etched over their faces as they explain their experiences of seeing their children put on a show.

Their occasional sadness that their children were born with a condition that has no cure, is matched only by their pride in seeing the show come together so well.

“It was a brilliant project to be a part of,” says Usha Shah, mother of the youngest participant, four-year-old Nikhil. “At first we weren’t sure how he would react to being involved and we took time to decide if we should go for it.

As it turned out, Nikhil reacted well. Although the youngster struggles to speak, the silent bond he forged with 17-year-old Fathi Haitham Shareef is one of the highlights of the film. He ended up taking a dance and movement role in the final play.

“By the end he’d grown in confidence so much, he would be going up to the rest of the group high-fiving them,” says Usha, a homemaker who lives with husband Sanjay, and their three children (the other two, Esha and Aman, do not have autism) in Dubai.

“Because of his condition, he finds it very difficult to express himself but it was obvious he enjoyed it. By the time it finished I think he was quite sad. I know we were.

“Due to the fact that he’s so young, this was the first time he has ever been part of a group and that actually gave us a lot of hope. We know now that he can manage it and he can thrive, and that suggests that he can lead a fulfilling life.”

Suha Abu Laila, mother of 10-year-old Omar and the aforementioned Fathi who both have autism, was similarly pleased her two children were involved. Fathi ended up as one of two narrators, while Omar provided a small comic routine.

“I wanted everybody to see our experience and to understand this condition,” says the civil engineer who lives with her two boys and husband in Abu Dhabi.

“Some people say we were brave for taking part, but if this can help other families then it is worth it.”

Did she notice a change in her offspring? She nods. “Previously they found it difficult to interact with others and sometimes even each other, they liked to be alone,” she explains. “But they became real team players. We were proud. Fathi ended up mentoring some of the younger children, which was not something we expected.”

All are small but defining moments. And collectively all of them combined might just lead to a small but defining shift in the way the rest of us respond to autism.

How common is autism in the UAE?

Although the UAE has no exact figures, it’s a condition that may affect as many as one in 50 children in the country. 

What causes it?

In most cases, there is no known cause for the condition. Many studies point the finger towards genetics, atypical brain development or immune deficiency, but these have yet to be proven. 

How can you tell if a child has autism?

There are signs that can help with early detection, with official diagnoses as early as 18 months. Parents should look for a lack of developmental milestones such as smiling and other facial expressions by nine months, interactive gestures such as pointing by 12 months, speaking by 16 months; and meaningful, two-word phrases by 24 months.

What should you do if you suspect your child has autism?

Don’t wait to seek advice, follow your parental instinct. The earlier a doctor can diagnose a child with autism, the better the chance for maximising a child’s potential. 

Can someone with autism lead an independent life?

Yes. Each child’s symptoms can be extremely different but, with proper help, many people living with autism can lead normal lives.