A life less ordinary | Sandra Borg

With more children being diagnosed with autism each passing year, president of the Autism Parents Association Sandra Borg discusses the major challenges parents face, ahead of World Autism Day.

“Multi-sensory resources for instance need to be upgraded since children with autism generally learn by doing things physically, playing etc., and not by simply reading through a textbook
“Multi-sensory resources for instance need to be upgraded since children with autism generally learn by doing things physically, playing etc., and not by simply reading through a textbook" - Sandra Borg.

Nine years ago, when her son was two years old, Sandra Borg started to notice her boy's lack of interaction, as he seemed to show little or no interest in what was happening around him.

"I sought professional help and my son was diagnosed with Autism Spectrum Disorder. I felt there was a barrier and I couldn't seem to bond with him."

20 years ago, this condition was not diagnosed unless a person was having severe difficulties. At times, communication difficulties were a more common diagnosis. But in this day and age, there has been a lot of information and studies on autism. Some experts claim that there could even be a genetic element to autism.

"It is estimated that 1:100 children are diagnosed with Autism worldwide, with males more likely to be born with this condition than girls, the ratio being 1:4."

Today, thanks to all the information available, her 11-year-old-son has managed to interact socially "in his own way".

But having your son diagnosed with autism isn't a walk in the park. Sandra says that it's highly stressful to learn that your child has this condition.

"One of the most difficult and stressful times for a family is when they first learn that their child has autism. It's something very hard to accept, which is met with denial, but once accepted, things start to seem a little bit easier and the child can benefit much more since the appropriate help is sought in the best interest of the child."

When asked if her son is aware he's different from the rest, Sandra says that "unless you tell your child he's different, through professional help of course, he wouldn't really know for sure. However my son does sense he's different. I do give him a hint here and there that he's different too. I reassure him that it is great to be different and we are all special in our own way."

And what is Asperger Syndrome/Autism Spectrum Disorder exactly?

"Asperger Syndrome falls under the Autism Spectrum Disorder, which is characterised by significant difficulties in communication, social interaction, alongside restricted and repetitive patterns of behaviour and interests.

"Many children can encounter sensory problems as well, coupled with an attention deficit disorder and learning difficulties. However, not every child with autism is the same."

When asked if there was enough being done in the educational sector where children with autism are concerned, she said that "since children with autism need constant support, I feel that there's still a lack of it, especially support in the homes. Lack of specialised training for personnel in the field of Autism is the greatest hurdle we parents face.

"On Learning Support Assistants, our association strongly believes that there's a lack of proper training before these dedicated people start to interact or support children with autism.

"We are trying to get the government to have LSAs trained specifically in autism. It's not that these support assistants don't try their best to achieve the best results for our children, however sometimes it takes more than just dedication."

Schools nowadays have some support through the Autism Support Group within the Education Division, where experts in the field visit schools and assess whether the children's needs are being seen to, while also monitoring LSAs teaching techniques.

"But the system is still very limited and regular sessions are needed, at least on a monthly basis."

There are other shortages as well, according to Sandra. "Multisensory resources, for instance, need to be upgraded since children with autism generally learn by doing things physically - by playing, for example - and not by simply reading through a textbook. In fact, the pictures tend to interest them more."

A question that often arises is of how adults with autism will care for themselves once their caregivers are no longer able to.

While the State mandates programmes for school-aged children with disabilities such as autism, there is little help for an individual with autism once he or she enters adulthood.

I asked Sandra who helps plan the future of these children when their parents are unable to cope, or are gone?

"Unfortunately, not a whole lot is being done on the adult level."

Sandra hopes that in the future, through pressure groups such as the association she leads, adults with Autism would be further assisted in gaining employment and finding success in other daily activities, while living an independent life.

In light of the government's recent cuts where support groups are concerned, Sandra said that "as an association, we believe funds need to be allocated to the person with a disability directly and not towards a specific organisation: the reason being that different children require different types and frequencies of therapy, not a one-size-fits-all system.

"The word that's going around is that the government intends to introduce a new funding structure towards persons with a disability in the future: a capped voucher system where a person with a disability is allocated a voucher with an amount of hours of therapy, instead of funds in the form of cash.

"In this respect, I believe that if the system is managed in a professional manner, funds will stop being drained out unnecessarily and directed to the person with a disability's needs accordingly. There is surely still a lot to be discussed in this area.

"Some parents may be tempted to use the funds they receive by spending the funds elsewhere. With the voucher system, abuse of this kind can be eliminated."

On full inclusion of children with autism in schools, Sandra feels that "interacting with other children more than being placed in a specialised school helps the child's interaction skills improve, however on the other hand adds that "there are situations when the environment in a school may be far too stimulating and becomes unbearable by the child. The problem is - how is our child going to communicate this to us?

"The concept of 'full inclusion' is that students with special needs can and should be educated in the same settings as their normally developing peers with appropriate support services, rather than being placed in special education classrooms or schools.

"According to experts, the benefits of full inclusion are: increased expectations by teachers, behavioural modelling of normally developing peers, more learning, and greater self-esteem.

"Parents should also keep in touch with the school's support assistants and keep an eye open at all times while identifying the potential of each child - a major challenge due to the barrier that exists between children with autism and their parents or teachers."

And what is Sandra's advice to parents who have just received the news that their child has autism?

"Learn as much as possible about autism and the different kinds of treatments, so you can identify what could work for your child. Information is a powerful tool for a parent to get to know his or her child better and assist them through their life.

"Make sure that the school is able to provide the appropriate education. Children with Autism are entitled by law to a free and appropriate education. Parents must be their child's advocate in this area."

Sandra says that to better address autism, specifically in adults, she'd like to see more specialised staff training and more supportive environments, although there's quite a lot of awareness in schools which also helps makes diagnosing a child with autism far easier than it was before.