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Autism is still a widely unknown condition in Iran.
Autism is still a widely unknown condition in Iran. Photograph: Corbis
Autism is still a widely unknown condition in Iran. Photograph: Corbis

Light across the spectrum: the challenges of autism in Iran

This article is more than 8 years old

Awareness about autism is growing in Iran through TV shows and educational campaigns. But families still struggle without any outside help and worry about the future when they are gone

Yalda was nine months old when her mother Farideh Hojjati first became concerned at her restlessness. When Yalda was 18 months, she started losing her few words and sentences, and Hojjati took her daughter to several doctors.

One diagnosed hearing deficiencies, another found Yalda “mentally retarded”, and a third said she had a brain disorder. Yalda was three when a doctor finally diagnosed autism.

“I asked her doctor what autism was, as I’d never heard of it,” says Hojjati. “When he explained, I felt the end had come.”

That was in 1983. Now Yalda is 35 and lives with her parents in the Iranian city of Isfahan. She has ‘level 3’ autism, commonly known as severe autism. Yalda barely says a word, does not interact much with others, and needs constant care.

Autism is a neurological disorder, usually graded in severity along a spectrum. It causes problems with thinking, feeling, language, and relating to others. There are no reliable figures for its global extent. The World Health Organisation noted in 2013 that reviews estimate one child in 160 has an autism spectrum disorder but that prevalence varies “substantially” across studies.

Iran has no official estimate of its autistic population. Nonetheless, the State Welfare Organisation says the number of diagnoses is rising. Neda Asghari, a clinical psychologist who has been working with autistic children for nine years, is sceptical.

“Several of those diagnosed with autism are not autistic,” she says. “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.”

Asghari works at Tehran’s Pooyeh Clinic, which offers psychological and rehabilitation services. She says autistic patients can develop their faculties under professional care, but sometimes parents’ attitudes do not help.

“Families refuse to accept their kids’ condition,” explains Asghari. “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.”

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But acceptance is not always easy, especially when society lacks awareness.

For Hojjati, it took 15 years to accept Yalda’s condition. Taking care of her daughter was not easy, as she was aggressive and needed constant supervision. When Yalda was small, Hojjati took her out everywhere, but as she grew up, it became difficult to manage her on the street. “She was getting bigger and gaining weight, and I could no longer control her,” explains Hojjati.

But that was not the only problem. People’s reactions also annoyed Hojjati. “Society pushed us into isolation. I’ve explained Yalda’s situation to relatives, but they don’t get it. They still wonder how a person can have a normal IQ but not talk.”

Reactions affected not only Hojjati but also her younger daughter, Neda. When Neda was in primary school, her parents arranged a birthday party for her and invited her classmates.

“After the party her classmates told everyone at school that Neda’s sister was crazy,” says Hojjati, her voice breaking. “It still hurts when I think of what Neda might have felt when she heard them saying that.”

Rouhi Mandegari has a 23-year-old son on the “high-functioning” end of the autism spectrum. Mandegari, who moved to the United States three years ago, recalls people’s reactions in Iran.

“At school people would think he was crazy,” she says. “They would mock him and sometimes beat him. Eventually I had to pull him out of school and home-school him. And when we were on the street, people would stare at him or pity him. Here in the US you don’t see pity in people’s eyes, you see understanding and kindness.”

The reactions stem from a lack of understanding within Iran. But this is now changing. Over the past year, there have been TV shows and public exhibitions on autism, as well as educational campaigns by autism organisations.

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Kiandokht Salehi, mother of 19-year-old Ehtesham, says parents of autistic children should help educate society by taking them outside. But she admits this is not easy.

“Most of these kids don’t have distinct physical characteristics so that people know they have a disorder. So when they talk loudly or make a mess, sometimes people behave inappropriately. I stopped taking Ehtesham to the park when he was younger, because as soon as we arrived, most people would leave. But now I take him out with me and explain his situation. Most of the people understand and empathise.”

When Yalda turned 12, Hojjati found it was too difficult to look after her at home. As there are no nursing homes for autistic people, she took Yalda to a nursing home for people with “mental retardation” in Tehran, around 450km away (280 miles).

Yalda liked the place. Being surrounded by people made her happy. For six years Yalda stayed in Tehran with her parents frequently visiting.

But Hojjati had an uncomfortable feeling. “Sometimes I would pay surprise visits and find that the personnel were not taking enough care of the kids,” she says.

On one visit, Yalda looked pale. “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.”

That was the last straw. Hojjati took Yalda back to Isfahan. At home, when she undressed her, she found 12 deep wounds. When a doctor examined them, he said they were not all bedsores. Hojjati confronted the nursing home, but it denied any wrongdoing. She filed a complaint, but her efforts were in vain.

Yalda was hospitalised for three days. When she was sent home to recover, Hojjati had made up her mind. As long as there was no specialised nursing home for autistic people, Yalda would stay at home. “I accepted her autism after 15 years and decided to take care of her myself.”

Autistic people need specialised care and training, which requires rehabilitation technicians, dieticians, educators, as well as occupational, speech and physical therapists. There are now a few day-care facilities for autistic people in Iran that offer some or all of these services. But stories about bungling staff are rife.

Salehi, Ehtesham’s mother, says she will not send him to day-care: “People with autism are very active. They might push or hit each other, so someone should constantly keep an eye on them. I need to be sure my son won’t be hurt. I don’t want to leave him at a centre in the morning, and take him back with a broken hand or leg in the evening.”

Of course, autism is a major financial burden. Hojjati says Yalda’s medicine and cleaning products (diapers, towels, etc.) cost 2.5 million tomans (£543, $845) a month, and there are also costs for therapy and doctor’s visits. Considering the average monthly income of an Iranian family of 2.4 million tomans in urban areas and 1.2 million in rural areas, parents say not everyone can afford to send their child to day-care and rehabilitation centers, which would cost them an additional 2 to 4 million tomans per month.

Insurance companies are little help. “In the case of government clinics, insurance companies cover 40% of the costs,” says Asghari, a clinical psychologist. “But if families are not insured or want to take their kids to private centres, the entire cost is on family.”

Due to both lack of trust and cost, most parents care for their children at home. Those who can afford it use a nurse.

For years Yalda had a nurse, but for the past nine months, her parents have looked after her alone. Yalda is now on a strict diet and her parents are worried that a nurse would not abide by the instructions. With her father working away out of the house, the main responsibility falls on Yalda’s mother.

For the past 17 years, Yalda has left home only a few times. She spends her time inside, sometimes in the yard, which means her mother rarely goes out.

“We haven’t lived in a true sense,” says Hojjati. “We can’t go anywhere, we can’t socialise.

“I’m 58 now,” she says, adding that she is physically incapable of looking after Yalda on the street.

Hojjati tries to live in present but she cannot help but think about the future and is concerned that she and her husband will not always be around.

“My husband sometimes says when we are too weak to take care of her, maybe we should all die together. Someone should do something. There should be a nursing home for autistic kids. I as a mother need to be sure that when I die, this girl will not be left on her own.”

Yalda on the balcony. Photograph: Courtesy of Farideh Hojjati

Some parents say they want to leave Iran for countries with nursing homes for autistic people. But it’s not a viable option for many: it’s expensive and chances of acquiring foreign residency with an Iranian passport are slim. Others say they are willing to work together and help establish a nursing home in Iran.

Naghi Momeni is among them. He is a biomedical scientist in Sweden who researches the origins of autism spectrum disorders. Momeni says the main issue in Iran is the lack of resources for families. He and his team are planning to establish centres for autism in Iran and working with authorities to ensure the services they want to provide are affordable to those who need it.

“We are planning on establishing special schools, daycares and nursing homes, all run by autism specialists,” he says. “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 says these centres will be established soon. “We haven’t determined a specific time yet, but it will be in the near future.”

Hojjati tries to stay positive. When her optimism wavers, social media provides solace. Over a year ago, she opened a Facebook page for Yalda and started writing her story. “Facebook [really] helped me and pulled me out of darkness,” she says. “Whenever the Internet speed allows, I come on Facebook and write about Yalda’s current condition.”

Several Facebook pages connect families dealing with autism. They talk, consult, and boost each other’s morale. Sometimes doctors and psychologists join in.

It was through Facebook that Hojjati got to know Momeni. Momeni, who offers free consultation to parents on Skype, suggested a specific diet for Yalda on, and Hojjati says this has improved her ability to focus.

There are several groups on other mobile apps, including WhatsApp. Despite Iran’s slow Internet speed, those within Iran are constantly in touch with parents around the world. Everyday hundreds of messages are posted, as members bond, give tips, ask questions, discuss diets, or just chat.

“We understand each other,” Hojjati says. “When I write ‘I’m happy today, because Yalda was able to poop’, they know what I mean.”

The friendship is not just virtual. Last year Yalda had a visitor from the US: 17-year-old Ramtin, who is also autistic.

“I got to know Ramtin’s mother through my Facebook page. Last year she said she was going to visit Iran and asked if we could meet. They came to Isfahan and to my home. We talked and Yalda and Ramtin played with each other. I’m in contact with so many people: those who live abroad always ask me if I need anything so they can bring it when they are visiting Iran.”

In July Hojjati wrote on Facebook: “Surprise! Today Yalda suddenly went to her digital piano and started playing. First she was hitting it, but after five minutes started playing with one hand… If she continues, I’ll get her a piano teacher… I know one day Yalda will astonish everyone with a masterpiece… My daughter has become such an artist.”

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