Little is still known about disorder, but experts gathered in Dubai hear more than 90% of sufferers are intolerant to gluten and lactose.
Telling link between diet and autism
DUBAI // The role of food in causing and treating autism is one of the main topics of discussion by experts on the disorder in Dubai this week.
While much about autism is a mystery, some are certain food lies at the centre of it.
"Diet plays a very important part in treating autism," said Dr William Shaw, the director of The Great Plains Laboratory in the US and a board member of the National Academy for Child Development.
Dr Shaw said more than 90 per cent of children with autism suffer milk and wheat allergy. If not diagnosed it could hamper their treatment and lead to stunted growth and development.
He will be giving workshops to parents during the Autism Around the World conference, which ends tomorrow at Zayed University.
Cutting out problem foods can help in key areas such as speech and self-harming tendencies, Dr Shaw said. "Parents who have made these dietary changes have seen those autism-related issues reduce considerably," he said.
But a small, intensive study in the US published last year found removing wheat and dairy from an autistic child's diet did not help.
The adjusted diet "did not demonstrate a change in sleep habits, bowel habits, activity or core symptoms of autism", said the lead researcher, Dr Susan Hyman of the University of Rochester.
For many parents solutions remain elusive and they are left with hunches and hopes.
Lara Mouawad, whose son Ryan, 4, has mild autism, could not understand why he was a picky eater.
"He hates pasta, does not like anything that is sticky and sometimes has meat," Mrs Mouawad said. "It's worrying because when he returns from school his lunchbox is untouched." That apparent fussiness could be a sign of a zinc deficiency.
"That needs to be identified and then an addition to the diet will bring changes," said Dr Shaw.
Mrs Mouawad recently had Ryan tested but remains unsatisfied.
"I was told he does not have a casein or gluten allergy but I am not convinced," she said.
Casein is a protein found in the milk of mammals. Gluten is a protein found in wheat products.
Addiction to some foods is common among autistic children and often the result of food intolerance.
"In this case, the source should be found and stopped immediately," said Dr Melissa Olive, a specialist in early childhood special education and a behavioural consultant.
"If this is ignored then it could cause cancer in the long term, inflammation that prevents them from absorbing nutrients and undernourishment leading to a failure to thrive."
Dr Olive said a reinforcement method could be used.
"So the child can be told that if they eat a certain food then they will be given what they like, for example, being allowed to play on the iPad," she said. "Over time they learn that food is not scary and it is tasty."
Experts said there was a general lack of knowledge about autism in the UAE. Even the extent of the problem was not well recorded.
"We know it is a problem but we have no statistics to determine how many children are autistic," said Dr Ali bin Shakar, the president of the Emirates Medical Association.
"A survey … and collaborative work by the ministry of health, education and social services is necessary to ensure they are included in schools and all aspects of society."
Schools have begun to accept children with special needs as authorities enforce regulations to promote their education in the mainstream.
But the lack of qualified special education teachers and therapists remains a challenge.
One educator said it was sometimes hard to convince parents their children should be assessed.
"They are not ready to accept that their children might have autism," said Smitha Kodoth, a special educator at Pristine Private School in Dubai, which conducts counselling sessions with parents.
"Their eating is an essential part of the treatment and parents often ignore that, so we try to work with them and encourage them for further investigation."
Mrs Mouawad says schools rarely have the expertise to successfully include special-needs children.
"I had a hard time finding a school with a special needs department," she said. "They are trying their best but the shadow teachers are still not fully aware of how to take care of my child."
Misconceptions about autism can often lead to later interventions
DUBAI // By his first birthday, Jack Timewell knew five words: hi, bye, mum, dad and nan.
But by the time he had reached 18 months his mother, Kelly Webb, noticed her son starting to lose his limited vocabulary. He showed very little inclination towards social interaction and avoided eye contact.
“We had no idea what was going on,” says Ms Webb. “I made the mistake of asking friends and family. They told me not to worry, he’s a boy; that it was normal for him to develop slower.”
What she did not know was that her son had regressive autism, a form of the disorder that does not begin to show its signs until a child is between 15 and 18 months old.
As he passed his second birthday, Jack grew more withdrawn. He was crying more and began having serious problems with constipation.
Ms Webb surfed the net for doctors who specialised in speech delay.
“In my head, autism was something you were born with and something that you spotted from birth,” she says.
“I didn’t think that it was something that could occur later.”
Dr Bariah Dardari, a paediatrician at the American Hospital Dubai who was Jack’s initial doctor, says parents often make the mistake of attributing developmental delays in their sons to gender.
“In fact, autism is much more common in boys,” Dr Dardari says. “So you cannot disregard the signs just because the child is a male.”
After the diagnosis, Ms Webb took her son to the Child Early Intervention Medical Centre where he still receives four-hour daily sessions for applied behavioural analysis.
At the sessions, experts look at the way children respond to different types of stimulus.
They also try to correct unusual behaviour such as hand flicking and lack of eye contact. The sessions are usually coupled with speech and occupational therapy.
But they are “very labour intensive and expensive”, and most insurers do not cover the fees, says Dr Shola Faniran, a developmental paediatrician at the centre.
A month of 10 hour-long sessions a week costs Dh7,000, and children often need double that.
Hiring people to assist children outside the centre costs between Dh145 to Dh235 an hour. Case managers and supervisors also need to be paid.
The cost forces many parents to compromise and they often employ a shared helper, says Dr Faniran.
Dr Dardari says many insurers are under the false impression that autism is only a “psychiatric problem”.
“After much research, it has been found these children have several issues biologically, including problems with their gastrointestinal tract, issues with their immune system, and oxidative stress, meaning that they cannot clean their systems of toxins and heavy metals,” she says.
The result is huge bills – an average of Dh70,000 a year to treat an autistic child, according to Dubai Healthcare City, which has four private treatment centres. But Dr Abdul Kareem Al Olama, an executive director at Dubai Healthcare City, says parents should never lose hope.
“There are many [public] facilities, such as Rashid Hospital and the Dubai Autism Centre, that parents can approach,” he says.
“Parents shouldn’t panic, there is help available.”
That help includes AutismUAE, an initiative in Dubai that aims to provide inexpensive support services, charging as close to cost as possible.
And parents do sometimes manage to persuade insurers to pay. After a long battle with the her insurance company, Ms Webb finally convinced it a year ago to cover Jack’s treatment, which was a huge relief.
“He’s a very happy boy now,” she says.
“He knows what he wants and he’s also much more affectionate with other people.
“There have been many improvements, but he’s still autistic and there are many barriers to overcome in the next few years.”
* Manal Ismail
@ For more on CHILD NUTRITION, visit thenational.ae/topics