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Teenage is a sensitive time for all children, especially for those with autism. Four parents explain how they navigate daily lives with their autistic teens.
Pranav is a caring 18-year-old. He wants to help anyone in trouble. And he gets very emotional if someone gets hurt. But it is sometimes difficult to make him understand the concept of social boundaries. Nor he does realise that sometimes, people may not want or need his help.
Why is this so? Pranav is different from most teens his age – he is on the autism spectrum. So, his mother, Anima Nair, has to guide him through the intricacies of relationships and socially acceptable behavior. Anima, more than others, knows what it is to be a parent to a child on the spectrum.
She is also co-founder of Sense Kaleidoscopes, a Bangalore-based school for children with autism spectrum disorders (ASD). Here, the teachers and caregivers work hard to help children like Pranav navigate the emotional and physical changes and challenges, that teenage comes with.
So, how does a parent of an autistic teen handle something as natural as attraction to the opposite sex? The important thing is to first find out what the teen in question is going through. And then, help him negotiate the ups and downs of the relationship.
“For instance, Pranav had a crush on a girl. But I realised later that his idea of a ‘girlfriend’ is very simple. He wanted her to eat her meals with us (at home). And he wanted to be around her, that’s all,” explains Anima.
Becoming a parent is often the beginning of a journey. But being told you are the parent of a child on the spectrum is even more life-changing. Anima and her husband were in America when Pranav was born.
They came back to India and Anima gave up her career to look after Pranav. Eventually, she and Akshayee Shetty founded Sense Kaleidoscopes, to help other parents of children on the spectrum.
Teenage is a sensitive time for all children. They are leaving their secure childhood. At the same time, they must prepare themselves for a competitive world, while dealing with the changes in their bodies and minds.
In fact, most teens with autism seem to show a ‘worsening’ of their symptoms once they hit teenage. This is because children with ASD are often unable to communicate easily. Also, some suffer from seizures, display aggressive behavior and need to be on medication.
Experts suggest that autistic teenagers need continued and constant support from family and school during their teenage years. They may also need more support than regular peers in understanding puberty and sexual development. However, it can often be very difficult to make a child on the spectrum understand what ‘dating’ means. Equally difficult can be teaching the child how to keep himself safe in certain situations.
Dr Preeti Jacob is an Associate Professor at the Department of Child and Adolescent Psychiatry at the National Institute of Mental Health and Neuro Sciences (NIMHANS) in Bangalore. According to her, education about sexuality must begin early in children who are on the spectrum.
She says, “It is not just about prevention of abuse. They must be taught about sexuality and its expression in a socially acceptable manner from early childhood.” That is why parents need to prepare their children for adulthood, she stresses.
But how can a parent help an autistic teen understand sexuality? Let us look at Shashwat, a quiet 18-year-old who speaks only when spoken to.
When he was just a two-month old baby, his parents realised he was different. He just would not sleep and was hyperactive. That is when he was diagnosed with ASD.
As he grew older, Shashwat was often oblivious to his surroundings. While walking or playing, he would hurt himself by stumbling or dashing into objects around him. He would also avoid social interactions outside his family.
Today, however Shashwat is calm and controlled and speaks when spoken to. Malvika Chaudhary, his mother says: “Years of therapy helped us train Shashwat in socially acceptable behaviour.”
For his parents Swapan and Malvika, adolescence has frankly, been extremely challenging. It is not just the fact that the child is changing physically and emotionally. But is also that the child does not sometimes understand what the changes entail.
“For instance, Shashwat, may sometimes run straight from his bath to me so I can apply an ointment on him. He does not realise that he has to cover himself up. As his parents, we have to constantly make him aware of what he can do in public and what must remain private.”
This applies to his dealings with the opposite sex, as well. “At the age of 14, Shashwat began to get attracted to girls. He likes their company and likes to give them his favourite belongings. In fact, he likes to sniff some people. It is a part of how his brain works. Some girls are able to take this behavior in their stride in the community where we live, while others cannot,” explains Malvika.
So, as a parent what does she do? “We told Shashwat that he has to maintain a one-arm distance from everyone he meets. So, he now says tells himself that aloud when he meets someone. This does create an awkward situation at times. Eventually, people do understand. Shashwat now knows, for instance, that he cannot hug everyone. And there is a lot of improvement in his social behavior too,” says Malvika.
According to Dr Jacob, it is essential that parents focus on an autistic child’s areas of strength. “For children on the spectrum, parents need to focus on their areas of strength or interest. Also, helping a teen with autism acquire skills to live independently, is paramount. To that end, parents need to teach their teen how to take care of himself, cook, do laundry, so on. These are essential skill sets. Needless to say, these skills must be taught in a supportive context,” she stresses.
At Sense Kaleidoscopes, the goal is to also teach children with autism daily living activities. They also try to train the children in a vocation that will help them become independent as adults.
Pranav, for instance, loves painting. Art lovers have appreciated his creations. Recently, there was an exhibition of paintings in Bangalore by artists who have ASD. Pranav’s paintings were also on display. At the art gallery, he interacted with everyone and told them about his work.
“Imagine his confidence,” says Anima. “My younger child is a regular 15-year-old who helps me with Pranav. She gives him much-needed companionship. At Pranav’s art exhibition, she said quietly on the sidelines. Even as a little girl, she knew her brother was special,” says Anima.
Art has come to Malvika and Swapan’s rescue too. They tried various ways to make Shashwat learn the meaning of earning a living. To their relief, at Sense Kaleidoscopes, they have found a method that worked.
The school has helped channel his creativity into beautiful paintings that have sold in recent exhibitions such as the renowned Kochi Biennale. “We are happy when Shashwat is happy. And we don’t really expect anything but if he is able to take up a vocation, we will be at peace,” say his parents.
Art is also a beautiful way for a non-verbal child to express his emotions and thoughts. That is how it is for Anshuman Kar, also 18. He was in a mainstream school in New Zealand until the age of 13. That is when his parents came back to India.
His mother Sushmita explains: “When we came back to India, a friend suggested giving him colours to draw and paint. That changed our lives. He can read and write today and is a budding artist. We have found a support system in India. I am thankful I can be with Anshu while my home is looked after,” she says.
His parents taught Anshuman activities of daily living. “He also goes to a workshop called Serene where children with autism learn art and craft. This, we hope, will give him a vocation in life,” she says.
Anshu loves people. “Yes, children with autism do have problems with social boundaries. We have had to teach Anshu how to respect and be aware of these boundaries,” says Sushmita.
Is parenting an autistic girl any different from raising a boy on the spectrum? For example, statistically, more boys than girls are diagnosed with autism.
Worldwide, autism is at least three times more common in boys than girls, notes an article on Spectrum (a forum which publishes news and expert opinion on autism research) “This skewed sex ratio has been recognized since the first cases of autism were described in the 1940s. One potentially important factor is diagnostic bias. Several studies suggest that girls receive autism diagnoses later in life than boys. This indicates that the condition is harder to spot in girls,” notes the article in Spectrum.
Signs of autism in girls, especially high functioning autism, can be easy to miss, say experts. Or can be misdiagnosed. And until recently, most symptoms in girls with autism who did not have cognitive impairment, were overlooked.
Let’s look at Meena Raina* and her 14-year-old daughter Seema*, who has been diagnosed as a high-functioning autistic. “Seema was in a regular school until recently but had trouble communicating with her peers,” explains Meena.
As a young child, Seema began to speak at a later age and found it difficult to maintain eye contact. But now, she can carry on conversations with ease. She also attends Sense Kaleidoscopes where she enjoys painting and loves writing stories.
Unlike the parents of the autistic boys, Seema’s mother does not have too many concerns about socially-appropriate behavior. “She is a regular teenage kid who has travelled with her school group to several places. I have no concerns really, about her. She knows that she must not talk to strangers and all that,” explains Meena.
On her part, Anima, has only one wish for her son Pranav. “I wish he learns to become independent,” she says. “And I also hope to teach him to drive. I tell him, if he does not paint, he will not have money. His understanding about money is improving. He now knows he has to earn money and make a living.” And with the unstinting love and support of his parents, Pranav definitely will.
(*Some names have been changed on request)
Picture credits: Still from 2007 Bollywood movie Apna Asmaan
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