Parents struggle to get proper advice on autism

Research has cast some light on autism spectrum disorder, writes Tahir Saeed

The effects of autism are best dealt with through therapy. (Razan Alzayani / The National)

Most of us are familiar with the word autism, but in days gone by it was often misdiagnosed and wrongly treated. According to the US Centres for Disease Control and Prevention, autism now affects about 1 in 50 children. That is a startling statistic, considering the rate was estimated at 1 in 88 in 2007 and 1 in 1,000 just 10 years ago.

Imagine living in a community of 1,000 people, you will meet 20 individuals having autism spectrum disorder (ASD). Furthermore, boys are four times more likely to have the condition.This rise in the number of diagnosed cases is mainly due to more awareness and knowledge about the condition.

ASD was always there, but we were not always very well-equipped to identify it. We now have better tools and training to differentiate ASD from other issues. Secondly, research has established that ASD is a genetic-related neurodevelopmental problem.

In general, researchers have contributed significantly to our understanding of the disorder.

We need to understand that there is no cure for ASD and it’s a lifelong problem.

However, with proper intervention and planning, one can make a significant difference in the lives of affected individuals.

Research suggests that ASD can be identified in babies as young as six months old, especially when the parents suspect delay in social communication, motor skills and social interaction.

However, compared to other countries, parents are struggling to get a proper diagnosis for their children in UAE.

In the majority of cases, the condition is misdiagnosed, because there are not many professionals available to diagnose it in children presenting with autistic features. In the majority of the cases, standardised instruments, which require intensive training, are not being used due to the lack of training. Secondly, in the UAE, for some reason, many schools do not cater for the needs of children with special abilities and parents may be left with very little choice other than to home school.

Home schooling can be emotionally and socially draining because of the child’s continual presence at home without any professional support or meaningful peer interaction. In reality, these children need intensive intervention using a specialised programme.

There are many therapies available in the market, but these often have no evidence to support them. Innocent parents or caregivers who are desperate to get help for their children are too often deceived by therapists offering a so-called complete or partial cure if you follow their intervention plan. For them it is a money-making exercise.

There are doctors who would advise medication for children with ASD. However, I would strongly recommend psychosocial intervention – which includes psychology, speech, language and occupational therapy – for the reason that research indicates against results with the use of medication.

In addition, parents need to know that their child can respond well, providing they start spending quality time with them.

Children with ASD find playing very challenging and need a lot of input in this area.

Therefore, it is important that the caregiver spends at least 30 minutes sitting with their child and engaging them in play that includes sharing, turn taking and role playing. Also it is important to provide opportunities for your children to interact with other children.

Therefore enrol them in a play group, although these sessions should be of a short duration initially and will largely depend on your child’s ability to stay in an unfamiliar environment.

Dr Tahir Saeed is a consultant and clinical psychologist at the Yas Medical Centre in Abu Dhabi