Small steps, hand in hand

He is a 5-year-old boy. Most days, he is happy playing by himself, with his bead string or colour blocks. Occasionally his gaze is fixed outside the window, lost in the light. He throws tantrums when his favourite toys are taken by his 2-year-old sister. He is happy when he hears music – anything from classical to Bollywood numbers. He cannot sense any approaching danger. He has no fears of heights or heat.

When Shyamantak was 3.5 years old, he was diagnosed as autistic. His parents were counselled and trained to adapt to the child’s world. He goes to a special school where specially trained teachers take care of his learning. Today, about a year since he began special school, his parents have no difficulty in gauging his moods. His limb co-ordination has improved and other small changes are promising.

What is Autism?

Autism is a complex neuro-developmental disorder. It is usually apparent in early childhood. Parents of autistic children are under constant stress. “People with autism can be little autistic or very autistic. It is possible to be bright, verbal, and autistic as well as mentally retarded, non-verbal and autistic; hence the term “Autism Spectrum Disorder.” Sometimes there are other disorders like Mental retardation, Cerebral Palsy which accompany autism”, informs medical student Shivani Bharadwaj, who is specialising in paediatric neurology.

Early intervention is the key

Nithya Lakshmi, Administrator of Apoorva Centre for Autism school at JP Nagar emphasises the importance of early help saying, “The earlier we start the therapy, greater are the chances of improvement by the time the child is 6-7 years old. We have seen phenomenal changes with one to one guidance. No single treatment is best and treatment is typically tailored to the child’s needs”. After a child is diagnosed as autistic, early intervention is the key. If intervention/training begins by age 2-3, chances are that they are mainstream ready by the time they are 6-8 years of age. Early intervention also helps in learning coping skills and to build on the child’s unique strengths.

“No single treatment is best and treatment is typically tailored to the child’s needs”. Pic courtesy: Apoorva centre for autism.

Kshma Suresh, a city based physio-therapist says, “Most parents try a variety of therapies and treatment combinations. They finally settle for what seems to be most beneficial and financially viable. It is the caregiver/trainer who can give maximum support and guidance and counsel the parents”. She says she has seen parents run from pillar to post trying every therapy they hear about and realising that all of it may not work for them.

“As of now, there is no complete cure found for Autism; it is treatable. Along with sincere effort, acceptance, love and care, these children can find a place in society. Children with autism improve radically, but they think and perceive differently from other normal children. They are usually good with numbers, memory, and drawing and are creatively inclined. Most autistic children look normal and largely they are non-verbal”, is the observation of Nithya.

“Each autistic child is different and needs individual attention and guidance”, says Sheshadri Rao who conducts regular drawing classes at Banashankari II stage. He says he has found that autistic children are quite good at drawing and colouring and they are very happy doing it. Separate batches are conducted for special needs children to ensure they get personalised assistance.

At Spastic Society of Karnataka, regular workshops are conducted for the parents of Autistic children. The workshop provides input about awareness of different therapies and how to integrate the therapies. Biomedical, diet and other social aspects are also addressed.

For list of schools in the city for children living with autism, click here.

Apoorva Centre for Autism at JP Nagar began in the year 2000 by a handful of parents of autistic children. Lions Club provided them space and the number of children has grown to about 60 today. Apoorva has the student teacher ratio of 1:1. The teaching composes of speech therapy, vocational training, yoga, regular outings and parent counselling.

The Parents who started this school took special training and they work here as teachers (Karnataka Parent’s Association for Mentally Retarded Citizens offers one year diploma in special education. The Spastic Society of Karnataka also offers a similar course).

Another special school in Bengaluru for severely disabled and with a special focus on Autism, ASHA began in 1995 under the qualified hands of Jayashree Ramesh, who is trained in special education from the University of California. Jayashree carefully designs the activities for the 100 plus children of the school. Asha School provides ample space for the autistic children to play, compact classrooms – each one just accommodating a handful of students, making individual attention a priority. Here teacher student ratio is 1:2.

At ASHA the teacher student ratio is 1:2. Pic: Divya Sharma.

Here too, most teachers are parents of the autistic children who are trained in special education. A parent Vasudha Shinde who stays near the Asha school so that she doesn’t have trouble in commuting her autistic daughter says, “This could be the best support system, since they would guide and understand the needs of these children, and as parents they can relate to our problems”. The teaching structure includes speech therapy, vocational training, music therapy, physio-occupational therapy, regular outings and parent counselling.

“We encourage parents staying nearby to visit each other and get connected. We are now forming a parent support group. This would help in better dealing with everyday issues of autistic children”, says Jayashree. “Frequent one-on-one counselling is essential for parents,” she adds.

 

At Spastic Society of Karnataka, regular workshops are conducted for the parents of autistic children. The workshop provides input about awareness of different therapies and how to integrate the therapies. Biomedical, diet and other social aspects are also addressed.

“The therapist, the parent and the child – all have to walk hand in hand, if any intervention has to work and if the child has to develop a skill. Autism care needs lot of learning aspects to be combined”, says Komala Chigatare from Sarjapur Road, trainee of one year Diploma in Special Education (Autism Spectrum Disorder) from Spastic Society.

Lack of Empathy

Empathy, sensitivity and tolerance towards any disability is lacking in Indian society. If the growing number of children at special schools is any indication, this cannot be ignored.

“Mainstream education system does not comprise of any issues of disability/special needs people. Ideally, by the time the student finishes 12th, he should be aware that a career in special education is an option. Our core curriculum does not include any mention of such a subject. Training people to assist the teachers in classroom to handle differently abled children takes a lot of work” is the strong viewpoint of Jayashree.

Schools like Prakriya, Sudarshan Vidya Mandir, and some more take children who are mainstream ready. Few students from Apoorva centre have made it to the mainstream, with initial training at their centre. “Even after they go to mainstream schools, we touch base with those teachers and if needed we councel or have individual sessions with the child to help them cope with the different setting and learning methodologies.” explains Nithya.

Sadagopan D, father of an autistic 32-year-old from Rajajinagar says, “The policy makers should realise that, if they don’t deal efficiently with special needs children today, they will have to deal with bigger issues in next 10-15 years. Simple policy changes in matters of public spaces, safety and awareness should be made now. More people know about autism, more likeliness of funds for research in this field. Social awareness is a major factor and media has to play a key role”.

He says that even special schools sometimes mix up mentally retarded children with autistic children and as a result, the children do not get enough attention or the necessary assistance. But the scenario is getting better slowly, he feels.

Acceptance

“Family members have accepted that my son is not normal. But they may not be willing to be of any assistance.” – is the stoic view of Saleem Ahmed, parent of a 14 year old autistic child. “As a parent, I also try to make least risky decisions, be over careful with every aspect of my life like driving, career, etc. We need to be there for our child.” He speaks out the view of most parents who worry about the future of their autistic children. Saleem is a working at the IISc and stays at Malleshwaram.

In some cases, parents deny to accept the fact that their child could improve with therapy. “Some parents think its best to keep their autistic children at home, under their constant care. They pity their children and beleive that it is their fate and nothing can be done about it. This generally happens with the lower income group. We work hard at counselling and convincing them to seek help.” says Nithya.

Recently released movie, My Name is Khan where the lead character played by actor Shah Rukh Khan suffers from a type of Autistic disorder, may increase awareness. This will hopefully do for autism what Taare Zameen Par did for Dyslexia – social awareness which would lead to acceptance and further research.

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2 Comments

  1. I have tried to find information on biomedical treation, such as Methyl B12 shots, or music therapy, I live near indira nagar, can someone please point me to those resources in bangalore. I appreciate the article, it was well written, but there is a lack of resources to mainstream austim children in India.

  2. All the points mentioned are very relevant to the issue and the article captures the essence of the problem as in the current scenario. A parent support group is vital, as we need somebody to share our concerns and have a few lighter moments. When discussed a major worry may appear less formidable. With autism concerns never go away. They only vary. A mother of a newly diagnosed child is concerned about toilet training, while I as a mother of 10yr old I am concerned about adolescence issues. As for My name is Khan was not as powerful in it’s portrayal as TZP. People who don’t understand autism cannot identify with Khan either. When my husband watched Rain man in his student years it was just another movie for him. My neighbor told me My name is Khan was an absolute bore.Also for people wanting to know more about autism ,you may check my blog http://care4autism.blogspot.com/

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