'Conquer fear to conquer autism'

INTERVIEW: Stephen Shore Let me begin by saying do not paint autism as something scary. It is not. Let us change the world of autism by bringing in new methods of managing the condition that give parents renewed hope

‘Conquer fear to conquer autism’

Fear is one of the key emotions parents of autistic children battle — fear of ridicule, fear of exclusion and fear of how the child will cope with life. Parents’ denial can ruin the child’s life. What an autistic kid needs is help to become a part of the mainstream.

Himself a high-functioning autistic, Stephen Shore’s work on how to address the problems of autistic children is followed by experts worldwide. Krishna Roy, a Calcutta-based special educator working with autistic individuals, caught up with the assistant professor at Adelphi University, Garden City, NY, at a conference in Delhi earlier this year. Young Metro presents excerpts of the interview ahead of World Autism Day on April 2

What are the new developments in autism intervention? There seem to be new ideas emerging about early intervention in children diagnosed autistic that signal a remodelling of how to manage autism.

Autism is a complex disability. Parents are often confused about how to deal with it. So let me begin by saying do not paint autism as something scary. It is not. Let us change the world of autism by bringing in new methods of managing the condition that provide parents with renewed hope. There are many myths about autism. Foremost is the fear felt by parents who feel their child simply has no future and is incapable of navigating through life on his/her own. Most parents are in denial about their children’s condition.

As someone with Asperger’s syndrome, it was my mother’s hard work and tenacity in my early childhood that helped me become who I am today. My mother accepted my challenges and never put me in a special school. The opportunity to study in a regular school opened the doors to higher education, including a PhD. I got all my early training in social communication from my mother. I used to bang my head on the wall when I felt frustrated because autism can be socially excluding. But her acceptance of my disabilities pushed me towards being part of the social mainstream.

To confront autism, a thorough assessment by a therapist is necessary. The most popular intervention method to train children with autism is applied behaviour analysis. It is a two-way partnership between the child and the therapist. Autistic children now have opportunities to move into the mainstream, even if not totally. Parents no longer have to lead their life worrying how their children will manage after them.

Applied behaviour analysis is a popular method worldwide. There must be reasons behind its popularity.

Mainstream children can learn from their immediate environment. They don’t need intervention but autistic children need their environment to be reinforced so that it is easier for them to learn. Applied behaviour analysis is all about creating this reinforced environment. It is a completely structured programme. This helps the autistic get into a habit and a regular schedule. It makes for easily observable behaviour.

Autism is situation specific. But is applied behaviour analysis adaptable to newly arising situations?

Applied behaviour analysis isn’t a one-stop solution. Criticism has surfaced as it is not wide enough to give freedom to the child to explore the environment on one’s own or manipulate the environment the way s/he wants to. What the child can do independently is worth experimenting and something that applied behaviour analysis does not offer.

What would you suggest as a complement to applied behaviour analysis to provide a holistic solution for taking the management of autism forward?

Criticism of applied behaviour analysis has led to the birth of Floortime. While applied behaviour analysis has been criticised as rote learning in an unchanged environment, Floortime proves that the child has an independent mind and can take the lead while adults can follow. It proves that the child can become a performer on his or her own.

You are familiar with how autism is handled in India. What more do you think needs to be done to bring it to the level of international best practice?

One important aspect that practitioners in India need to make part of their learning is the system developed by Dr Arnold Miller to facilitate children affected with autism and related disorders towards reading, writing, number concepts, symbolic plays and development of typical classroom activities. Taking the lead from his methodology by entering into a child’s world, actual support can be given to climb the “developmental ladder”. For children with low social, communication and organisation skills, the Miller Method stretches their coping skills, helps them accept a new environment and make transitions from one event to another without turbulence.

How does one follow the Miller Method?

There are courses in Massachusetts. The website (www.millermethod.org) is quite useful too. Parents should be aware of the Miller Method and it should be included in goal-planning during early intervention by therapists in consultation with parents. Addressing the condition requires a combination of applied behaviour analysis, Floortime, Miller Method and music therapy, not any one method in isolation. The combination is the magic wand. The sooner intervention takes place, the luckier the child is. Parents’ denial can wreck a child’s life.

Practitioners have faith in other established methods of management. How does one convince them that Miller Method is effective?

The Miller Method is not a stereotype. There is ample opportunity to explore and the instructor can change the task, making the child learn to perform from different locations, presented in different positions, and presented by different people. This makes it possible for the child to perform such tasks at school, at home and elsewhere. Add music as background or use it as therapy with the task or stamp feet on the platform to the beat of the music. After all, it is up to us to make the children’s lives better.

How insensitive are we as a society towards the autistic? Tell ttmetro@abmail.com