Learning that one’s child might have autism can be frightening. In the next Navhind Times Zest ‘Talk from the Heart’ series, on April 28, head of Inclusive Education, Sethu Center for Child Development and Family Guidance, Giselle Lobo, will give insights about the condition
Maria Fernandes | NT
Autism spectrum disorders are not a disease, but a disability and like every disability, the effects of it can be minimised, by identifying the barriers that exist and removing them or reducing the severity of their impact, states Giselle Lobo.
The head of Inclusive Education, Sethu Center for Child Development and Family Guidance, Lobo, as part of the next Navhind Times Zest ‘Talk from the Heart’ series will be discussing the characteristics of autism, the spectrum and how it relates to children, changes in lifestyle that parents have to make to include their autistic children and much more.
Autism has been defined as a neuro-developmental disorder that affects communication and social interaction and the diagnosis of autism in the present times is on the rise in the country. In the West, 1 in 66 children are diagnosed with autism and the figure has crossed the 15 million mark worldwide. “In the past, the number of children with autism in India was not clearly known, however today better diagnostic tools have revealed that the number is similar to figures worldwide ( 1 in 66),” shares Lobo.
Speaking about the characteristics of ASD (Autism Spectrum Disorders), Lobo says that the effects of autism range from mild to severe and the areas affected are always the same. “Children experience difficulty in communication, socialising and display stereotypical or repetitive forms of behaviour,” she explains. When autism is mild however, it is difficult for parents to detect very early on in life, she says, adding that even when the effects are severe, parents tend to try and explain it with other reasons. “For example, if a child is not talking even at the age of three, parents will say, ‘We are all late talkers in the family.’ A child who does not socialise easily is explained as being a very good and obedient child,” she explains. It is however important to remember that no two children with autism will appear the same, she adds. “People with mild autism learn the more functional routines of daily life like eating, dressing and bathing more easily but they struggle with communication and socialising issues. Whereas children with more severe autism have great difficulty in learning even simple daily routines,” states Lobo.
Generally children with severe autism also have intellectual disability, adds Lobo. In intellectual disability all areas of functioning will be affected, namely, self help, academic, social and communication. “A child can have autism with intellectual disability but every child with autism will not have intellectual disability,” she stresses.
Just like autism differs in the way it presents itself, parents’ reactions too vary, from profound shock and disbelief, to sadness, anger and even self-blame and guilt. It is very hard for parents to accept that their child has any kind of disability let alone one which is so unknown. And when parents don’t know about autism this kind of diagnosis is very hard to take, says Lobo. “First they have to accept that their child is different and then they have to understand something as unknown as autism. Being one of the invisible or unseen disabilities, a diagnosis of autism is very hard to take,” she says. On the other hand there are parents who already suspect that their child is not developing normally and therefore the diagnosis comes as a relief, she states. “Their suspicions are confirmed and they feel that they can do something about it and move forward,” explains Lobo.
Besides the initial shock, some parents also feel a sense of shame and there generally is a taboo associated with it. “There is a taboo associated with all disabilities because they are perceived as different from the norm. But autism is one of the unseen disabilities- there is very little known about it. Very often there are many myths that exist about it, like it is caused through bad parenting, etc. This lack of awareness causes people to be more afraid of the disability,” explains Lobo.
Early detection is key in helping a child with autism live a more normal life in society. Since autism can be seen as early as 18 months of age, children should be watched throughout their development for any warning signs of autism. High-risk groups, such as children with siblings diagnosed with autism, should be watched even more closely by physicians and parents alike. Listing the signs that parents can look for, Lobo says that delay in speaking is the most common sign. “If the child is not babbling, or saying single words like dada or mama or imitating sounds by one and a half or two years, that is a red flag,” she states. Lack of interest in other people is another sign. “Children who do not respond to others smiles or make eye contact with their mother or care givers by the age of one year need to be assessed more carefully. Children who rock, flap their hands, spin objects, or play by just banging toys can also be are risk for autism,” she continues.
Autism is not curable but it is treatable. Once detected, Lobo believes the next step is to assess the area of need. “These can be in the area of education, social learning, speech therapy or occupational therapy. Based on the areas of need, parents can then plan the intervention the child needs,” she says. In Goa, Sethu center is one place where children can receive a comprehensive assessment and intervention programme when they are diagnosed with autism.
She is of the opinion that parents and teachers have an extremely crucial role in the progress of a child with ASD. “Parents and teachers have to work together as partners in educating their child. Teachers must have an in-depth understanding of autism and know what are the strategies that can be used to teach them various skills be it academic or self help,” she says. However the role of the teacher is limited to the classroom and it is parents who have to carry on the intervention at home. “When parents and teachers work together the child benefits and progress is much faster,” she says.
(If you would like to join in the talk with Giselle Lobo on April 28, 9 a.m. at Dempo House, Panaji, then log on to navhindtimes.in/events and fill in the registration form. Last date for registration is April 22.)