Mothers stress need for more information about autism

Two mothers whose children suffer from autism are demanding more information about the condition, both among professionals and the public.

Doreen Falzon and Antoinette Vella expressed their frustration that there is very little information available about their sons' condition.

The two mothers, both members of the National Parents' Society for Persons with Disability (NPSPD), strongly believe this lack of information is leading to the stigmatisation of children and adults suffering from the condition.

Autism is a life-long neuro-developmental disability which affects the way a person communicates. It severely limits their ability to relate to others in a meaningful way, develop friendships and understand other people's feelings. Although about three-quarters of people with autism have accompanying learning disabilities, some of them have an exceptional skill, like drawing or playing a musical instrument.

Contacted by The Times, Joseph Camilleri, chairman of the National Commission for Persons with a Disability (KNPD), said professionals inform themselves about a condition when they are dealing with a case. However, he added, it was understandable that professionals could not be experts in everything.

Mr Camilleri said some non-governmental organisations, sometimes made up of parents, compiled information about their area and made it available to professionals. But the problem with autism, he explained, was that parents would be so taken up with taking care of their child that they would not have the time to do research and compile such information.

"Autism has always been a big priority of the KNPD," he said, adding that at the moment an expert in behavioural problems, Forough Hessabi, was working at the commission, meeting parents and conducting therapy sessions with sufferers of autism.

Neuropaediatrician Doriette Soler believes that raising awareness among health professionals is always worthwhile, although she also expressed her certainty that paediatricians are quite aware of the condition and also aware about the importance of early detection of autism. She said there is always place for education, in all fields, and not only autism.

However, she emphasised that autism is a very complex lifelong developmental disability and very often the early signs may be very subtle.

"Autism is not an easy condition to diagnose, especially early on, because the signs may be very subtle but I think there is room for more education," she said.

Mrs Falzon and Mrs Vella believe that inclusive education has led to more acceptance of the condition, although more still needed to be done. Mrs Falzon said that because children with autism were mixing with other children, their classmates were accepting and loving them like one of them, which, in turn, has an effect on these children's families.

"They achieve a lot through mixing with other children - if not academically, it helps their social development," she continued.

Mrs Vella said that when her son's former classmates meet him in the street they refer to him by name - Markos - and not as the child with autism, as children might have done before inclusive education began in Malta. The parents also start removing their stigma because their children have accepted a classmate with autism.

The two mothers emphasised the need for students studying to become teachers, doctors, psychologists and social workers to be given in-depth information about the condition.

"It's a big pity that there is no specialisation in this complex subject," Mrs Vella said.

Mrs Falzon said that when she gave talks to students about autism she realised that many of them were not really interested while mature students showed more interest in the subject.

The mothers stressed that children with autism are usually over-sensitive and it is therefore not ideal to leave them in an overcrowded place. Mrs Falzon said this was the case with Adult Training Centres, although the opening of small centres in various places was a big step forward.

They stressed the importance for people, including support workers, to give them a chance, and not let stigma take over. Mrs Falzon said at times people did not make an effort to get to know sufferers of autism and just steered away from them.

"When people get to know them, and understand their condition, the stigma decreases or goes away," Mrs Falzon said.

"It is not a condition which people should be afraid of. With a little love, you would go a long way with these children," Mrs Vella said.

When contacted, NPSPD acting president Marchita Mangiafico said the mothers' fears represented those of other mothers members of the society.

Parents of children with autism who would like to contact the society can do so by calling Mrs Falzon - who is the society's secretary - on 9940 6461.