At eight months old, Nigel was too silent for a child his age. For his mother, Sandra Borg, a teacher by profession, this was the first sign that something was wrong.
At first, Sandra and her husband thought that Nigel was not hearing.
“By the age of 1 year 4 months, he became a child full of frustration and could never be contented. He had severe tantrums due to his inability to understand verbal instructions and didn’t understand the rules of this world,” Sandra added.
She explained that her son “had a very short attention, he played in a different way and he was intolerant to changes in his routine”.
Her son didn’t acquire speech until the age of three, and it was at that time when the parents started doing research and found out about autism.
“From then we stopped blaming ourselves that we were bad parents and started doing everything possible to help our child,” Sandra told MaltaToday.
What is autism?
Autism is a complex neurobiological disorder that typically lasts throughout a person’s lifetime.
It is part of a group of disorders known as autism spectrum disorders (ASD). It is estimated that as many as 1 in 150 individuals is affected by autism, making it more common in most countries than paediatric cancer, diabetes and AIDS combined.
There are no official statistics about the incidence of autism in Malta, however the Autism Focus Group, which was set up to assist parents of children who suffer from autism, has around 80 couples as members.
There are three kinds of ASD – autism, Asperger syndrome, and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS). Autism forms the core of the autism spectrum disorders. Asperger syndrome is closest to autism in signs and likely causes.
Autism impairs a person’s ability to communicate and relate to others. It is also associated with rigid routines and repetitive behaviours, such as obsessively arranging objects or following very specific routines.
Symptoms can range from mild to quite severe. All of these disorders are characterised by various degrees of impairment in communication skills and social abilities, and also by repetitive behaviours.
The importance of early intervention
Autism spectrum disorders can usually be reliably diagnosed by age 3, although new research is pushing back the age of diagnosis to as early as 6 months.
Parents are usually the first to notice unusual behaviours in their child or their child’s failure to reach appropriate developmental milestones.
Some parents describe a child that seems different from birth who was developing normally and then lost skills. Paediatricians may initially dismiss signs of autism, thinking a child will “catch up” and may advise parents to “wait and see”.
New research shows that when parents suspect something is wrong with their child, they are usually correct. “If you have concerns about your child’s development, don’t wait: speak to your paediatrician about getting your child screened for autism,” warned Autism Speaks, the world’s largest advocacy group about autism.
Early behavioural intervention can result in significant improvements. Although parents may have concerns about labelled a toddler as “autistic”, the earlier the diagnosis is made, the earlier intervention can begin.
Currently, there are more effective means to prevent autism, no effective treatments, and no cure.
Research indicates that early personal intervention for at least two years during the pre-school years can result in significant improvements in IQ and language ability for many young children with autism spectrum disorders.
A mother’s experience
Sandra Borg explained that all children are different in their own way and the same applied for children with Autism. “Autistic Spectrum Disorder is very wide and no one child carries the same traits as the other.
“However, most children with Autism have poor eye contact and may find difficulty to communicate, to integrate with the persons around them and have limited imagination,” she told MaltaToday.
Surprisingly for most, Sandra said that their lives improved as a result of their son’s diagnosis with autism.
“When our child was officially diagnosed, our life changed to the better (to the contrary of most parents) since we finally found out what his difficulties were coming from and from the research we had made and bearing his potential, we felt that our child could improve,” she said.
“Also if provided with ongoing therapy and an educational setting which suit his learning needs, we believed that he could lead an independent life. Our life is a constant challenge full of new adventures,” Sandra told MaltaToday.
The Autism Focus Group
Since there was no focal point for sufferers of autism in Malta, Sandra set up the Autism Focus Group, of which she is the co-ordinator, as a sub-committee within the National Parents’ Society of persons with Disability.
“Originally the group was set up to focus on the needs of children and persons of Autism. So far we have organised a number of parent empowerment meetings whereby we provide information to the parents in order to enable them to make the right decisions for their children.
“We offer support via email or telephone. Apart from that we keep ourselves informed about the latest research on Autism and voice the needs of our children within school and the community. We try to create awareness within society through all forms of media,” Sandra explained.
“We do not work directly with the children but provide them with parents who are strong in their decisions and who are geared with all the necessary information to help them lead a better life.
“Happy parents equals happy children!” Sandra, a firm believer in the empowerment of parents as a tool for improving the situation of their children, told MaltaToday.
More support needed
Asked whether the State was offering enough support for children with Autism in Malta, Sandra said up till now, Government has provided Learning Support Assistants (LSAs) in school.
“However, this is very minimal when compared to their needs. LSAs working with children with Autism need to do their own research and are not provided with training.
“Also since children with Autism are visual learners, the curriculum needs to be adapted. Here there is lack of resources in schools and should computers be available to a child on a daily basis, they would benefit by far,” Sandra told MaltaToday.
On the other hand, parents of children and adults with Autism need a lot of support in the home such as home tutoring, carers and respite. “In this area there is a great need especially due to mothers being unable to work and thus have a very big financial burden,” she said.
Moreover, she complained that the subsidies for therapy “are being clustered to certain NGOs. This leaves a number of families with very little financial support especially if they have no choice but to use private therapeutic services.”
Another bottleneck is reached at the age of 16, when these children reach employment age. “There are very few opportunities for our children since their education would be at a standstill and would not have enough skills for employment,” Sandra complained.
Notable people with autism
Among famous people who suffer from autism spectrum disorder are Craig Nicholls, frontman of the Australian garage rock band, The Vines; Gary Numan, British singer and songwriter; Tim Page, Pulitzer Prize-winning critic and author; John Elder Robison, brother of author Augusten Burroughs and author of Look Me in the Eye, a memoir detailing his experience with Asperger's; Vernon L. Smith, Nobel Laureate in economics; and Satoshi Tajiri, creator and designer of Pokémon Pocket Monsters.
There were claims that even Albert Einstein and Isaac Newton may have suffered from autism, but a definitive diagnosis is impossible as both scientists died before this condition came to be known.
About World Autism Awareness Day
On December 18 last year, the United Nations General Assembly adopted resolution 62/139, tabled by Qatar, which declared April 2 as World Autism Awareness Day (WAAD) in perpetuity.
This UN resolution is one of only three official disease-specific United Nations Days and will bring the world's attention to autism, a pervasive disorder that affects tens of millions.
The World Autism Awareness Day resolution encouraged all Member States “to take measures to raise awareness about autism throughout society and to encourage early diagnosis and early intervention”.
czahra@mediatoday.com.mt
