'My three children are autistic. I fear for their future'

Awareness about autism has undoubtedly increased over the years, with added services and support being made available to children diagnosed at an early age. But for coming-of-age boys and girls who grow up in a world insensitive to their needs, leaving the sheltered world of child education and navigating the teenaged and adult world can be something like falling off the edge.

Valerie Brincat is mother to 14-year-old Craig and 12-year-old twins Hope and Yvonne. All three have varying degrees of autism, with son Craig having the most intense form of the condition. The overwhelming challenge is easily perceivable for Brincat, but to a world that is inured to ignore autism, it is no wonder this mother is crying out for a greater emphasis on individual cases to better equip people with autism to face the adult world – rather than having a one-size fits all approach.

Echoing her comment is the senior speech language pathologist Dr Rita Micallef who describes autism as a severe and multi-faceted development disability which never truly goes away. “Diagnoses need to be made sensitively and following a lot of different aspects to make sure that therapies selected are as effective as possible… it is essential that more than one person participates in the diagnosis given the fact that symptoms are not the same in everyone with autism.”

Parents and educators will need to have a clear image of how the condition affects all ways of life, if they are to make intervention at every stage of their children’s life as applicable to individual conditions as possible.

Valerie Brincat’s experience is in fact a testament to the different ways that autism can affect people. “My daughters go to a mainstream school, but my son attends a resource centre now, for instance,” she says, recounting how he had been suspended from a mainstream school due to his difficult behaviour. 

“Although his behaviour can in fact be challenging, I also realised that he wasn’t feeling comfortable at the school because he wasn’t feeling understood,” Brincat says, pointing out that children with her son’s severity of autism require specialised Learning Support Assistants who understand what causes certain difficult behaviour, as well as how to handle and avoid it.

But those LSAs are nowhere in ample supply as the fledgling system’s first intake of LSAs has so far only provided assistants to teachers in a bid to cater for the urgent demand that the change in schools streaming reform necessitated.

Brincat explained that treating her son’s meltdowns just like ordinary problematic behaviour, can never be conducive to giving children with autism the necessary skills to ultimately face adult life. “If educators don’t understand that a child with autism needs to be taken to a low-stimulus environment when they start showing signs of a meltdown, for instance, then the risk is that the situation can get out of hand and culminate in violence,” she says.

“Children might even catch on and manipulate the situation so that they can be sent home for their behaviour,” Brincat says, which is why she insists that specialisation for LSAs ultimately makes their job easier. 

The observation was in fact also underlined by Dr Micallef, who says educators, therapists and parents all needed specific training to understand that varying degrees of things like routine and visual aspects are essential to people with autism.

Brincat explained how her experience of mainstream education with her son had revealed that many schools needed to be made aware of how to deal with autism, even in the physical environments they provide.

“The vibrant colours, big letters, shapes and numbers that typically decorate classrooms, are tantamount to an assault on the senses of someone with autism.

“Schools need to understand the importance of having a so-called ‘quiet-room’ to take autistic children to when they are having an intense meltdown.”

Even the learning styles of children with autism are different from other children, and vary from one child with autism to another. 

“My son, for instance, cannot grasp abstract concepts like religion, history, literature or design skills, so it’s no use trying to teach him these subjects.

“However, he would have benefitted much more from learning a number of life skills, social skills, anger management and perhaps learning core subjects like English, Maths and Maltese through life skills. Such skills could ultimately help my son even in facing the employment sector in the future… but basic behavioural therapy would even put my mind at rest for the future.

“We can’t expect these children to become functional adults in society or even to understand how to act in a residential home when they grow older,” she said.

Brincat adds that although her son now attends a resource centre, where he was significantly happier than before, he still doesn’t receive the kind of therapy he so desperately needs from the school, and that the family has to pay for certain therapies out of pocket. 

“The treatment necessary for someone with autism is rather costly and the bills can rack up,” Brincat says.

Parents who didn’t have a significant income, or single parents for instance, could consequently sometimes not be able to provide the necessary therapies. 

Maggie Schembri, whose 23-year-old son Danny also has autism, paints a somewhat more hopeful picture, but she too stresses that she herself had to pay for some of the therapies that improved her son’s condition.

“Back when Danny was young some 16 years ago, occupational and speech therapy, as well as psychologists were available under state funding, but waiting lists could sometimes reach up to six months.

“Services at the Child Development Assessment Unit were available, but they also meant  very long periods of time in a waiting room, making the whole experience counter-productive,” she says, explaining that people with autism don’t cope well with waiting in queues or changing routines.

“But I credit the many private classes Danny has followed so far, including sessions at Inspire, with lifeskills and speech therapy making him somewhat independent already. He often goes out to watch movies and travels by bus all by himself,” she says. Now he has entered Sheltered Employment Training, which he attends twice a week, for a few hours at a time.

However well Danny has managed to develop by now, autism has caused a number of challenges, not least of all due to the routine he requires and the pressure changing such a routine puts on him. “Caring for someone with autism can also mean having to cut down on working hours, as well as putting other relationships like the ones with your other children, or even your partner, on the back-burner,” she says. If she could ask for one thing it would be more awareness about the condition.

 “We’ve come a long way, but there is still much to be done,” she says. “Before his diagnosis, I had only ever heard of the condition in a movie, and that it was something that seemed so remote from reality.

“Autism is ultimately an invisible condition, so many people tend to judge people or children with autism badly… a deeper understanding could help parents and even people with autism themselves feel more supported.”

Schembri adds that more awareness could also help create an environment where bullying was less frequent, something Danny had experienced once during his school years. “In an ideal world, public spaces would also have somewhere like a quiet room to allow people with autism to calm down when they’re having a meltdown,” she said.

“My biggest fears circle around the possibility that something happens to Danny when he is alone and unable to explain his condition. If he has a meltdown and the police get involved for instance, how will they know not to use a certain amount of force, or that physical contact might make things escalate more for him,” she says.

Here again, Dr Micallef says that autism affects both the way people learn different things, and the way they adapt to the world around them, “so naturally, a world that is ready to accept them, will help them feel more comfortable and capable of developing, as well as more motivated to do so.”  

“A deeper awareness would translate into different physical arrangements like dimming down neon tubes and even using less bright colours, arrangements that come naturally to anyone having frequent exposure to the condition.”

But Micallef also draws on the services offered by the national Speech and Language department within the primary health care department, of which she is the manager, and the acute demand for its services means it has to recruit more professionals and therefore widening services from health centres to schools. 

“We set up a specialised division for autism, which has the role to keep other Speech and Language Professionals updated with current assessment and intervention methods and material about autism.” The department has already seen some 500 individuals with autism this year up until March.

Interestingly, there has been a surge in the number of adults discovering that they have autism at a relatively late stage in life. “It’s never too late to start therapy, but not everyone takes the news well,” she says. “While for some it was a relief to learn the reason behind certain characteristics, it meant a loss of hope for others.”

Dr Micallef says that these cases reveal the importance of having services available even for adults. Adults with autism also make the need for people to be more understanding, more acute. 

“The possibility, makes a certain degree of understanding, even between colleagues essential… people with autism could also have some incredible strengths, making it even harder for people to realize that there might be some form of the condition.”

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