Yalda Hojjati is 35 years old. When she was a child, her parents brought her to numerous doctors to find out why she started being unresponsive and why she stopped talking— and each time, Yalda was given a different diagnosis.
One doctor claimed she had a hearing problem, another told her parents that she was mentally retarded, while a third one claimed she had a brain disorder.
It wasn’t until Yalda was aged three that she was finally diagnosed with autism. Her mother, Farideh, recalled:
“I asked her doctor what autism was, as I’d never heard of it. When he explained, I felt the end had come.”
Another problem in the country, according to clinical psychologist Neda Asghari, is that children are now often labeled or misdiagnosed with autism even though their conditions don’t categorically fall under this type of developmental disorder. She told:
“Several of those diagnosed with autism are not autistic. Sometimes kids with attention deficit disorder, obsessive compulsive disorder or learning disabilities are labelled as autistic. I personally have seen several cases that were first diagnosed with autism, but then as time went by, the diagnosis changed to ADD or hyperactivity.”
Yet another pressing problem, says Asghari, is the fact that many parents still could not accept their children’s condition. She told:
“Families refuse to accept their kids’ condition. Some think autism is an illness and must be treated. They want their kids to be like ‘normal’ kids. But their children are not disabled. They have their own – sometimes very good – abilities: if parents accept that, then we can work with their kids and help them improve their abilities.”
But the more concerning problem is that Iran still lacks the facilities and resources needed by individuals on the spectrum to secure their future. In the past, Yalda’s parents could not find a home that cares for individuals with ASD like her, so they ended up leaving her in a mental institution— which they regretted years after.
Yalda stayed in the institution for six years. Her parents constantly visited her there, until one day when Farideh noticed how pale and thin her daughter had become. That’s when she decided to bring her back home, and there she found that Yalda had 12 deep wounds that none of the staff at the institution could explain. Farideh recalled:
“She had lost a lot of weight. When I had been visiting 20 days earlier, she was running around and riding a bike. But this time she was like a corpse. She couldn’t even turn her head.”
It was only then that Farideh started to accept Yalda’s condition. Now she and her husband are worried that because they’re not getting any younger, no one might be there to take care of their daughter once they’re gone.
Many parents who care for children with autism in Iran share Farideh and her husband’s sentiment. Some of them are even willing to work together to be able to come up with something that will assure that their children will still be cared for even long after they’ve gone.
A biomedical scientist in Sweden has thought of the same. Together with his team, Naghi Momeni has started an initiative that aims to bring autism resources into the country, including special schools, nursing homes, and day care centers. According to Momeni:
“We are planning on establishing special schools, daycares and nursing homes, all run by autism specialists… Our centres will be able to network nationwide and globally, updating ourselves with the world’s latest scientific developments and share them with families and out staff.”
Momeni’s plan for the autism community in Iran is a welcome change— but that change might still be a far cry from what the families are really hoping for.
Apart from the need for resources that are vital in helping individuals with autism in the country, there’s also an urgent need to raise awareness about the condition, so as to lessen— if not completely eradicate— the discrimination being waged against those on the spectrum.
Source: Denise Hassanzade Ajiri Tehran Bureau for the Guardian Light across the spectrum: the challenges of autism in Iran