Interview

Volume 9 Issue 2 - April 01, 2012

“We have to address the ignorance, lack of knowledge and true understanding of diversity that is common within our own disability sector,” Merry Barua

Autism is often misunderstood, even within the disability sector, due to the extreme complexity combined with the invisibility of the condition. Studies say that 1 out of 150 children are affected with autism. India alone is home to more than 2 million people with autism. April 2 was declared as World Autism Awareness Day by the United Nations in 2007, to be observed every year beginning in 2008. On the occasion of the 5th World Autism Awareness Day, Merry Barua, Founder Director of Action for Autism, a Delhi based leading organisation on autism talks to Dorodi Sharma of D.N.I.S. about the various complexities of autism, the challenges facing the autism sector today and the hopes for the future.

D.N.I.S.: Can you educate our readers about autism and why it should not be clubbed with other intellectual and developmental disabilities?

Merry Barua: Autism is a complex neurological condition that affects the way a person communicates, understands and interprets relationships and social norms, and is frequently associated with unusual or stereotypical rituals and behaviours. In addition to this, there may be accompanying sensory defensiveness, motor coordination difficulties, seizure disorder, specific learning disability, intellectual impairment, weak central coherence, difficulties in executive planning, and difficulty in understanding the ways others’ minds work.

Of course there can also be an ability for deep focus, exceptional memory, and extreme straightforwardness verging on guilelessness. So there are upsides and downsides to autism. Autism is far more complex than can be captured in a hundred word paragraph.

A child with autism may have speech but not use it to communicate, not exhibit socio – dramatic play, and have difficulty understanding abstract concepts. Well so might a child with intellectual impairment one might say. But what if this description is that of a five year old child with autism who taught himself to use a computer at age two, and knew the names of all the States and Union Territories – untaught – at age three, but is not able to distinguish the colour blue from red.

Children with autism mostly learn in different ways; they often need to ‘learn how to learn’.

D.N.I.S.: What are the common misconceptions about autism that are still prevalent in the disability sector in particular and the society at large?

Merry Barua: The misconceptions about autism stem from the extreme complexity combined with the invisibility of the condition. These could be the usual chestnuts like bad-parenting, poor discipline, spoilt brats, uncaring unloving parents, and parents who do not want their children to be independent. Of course the typical Indian parenting pattern is not exactly about promoting independence; and that has nothing to do with autism or other wise. But if a parent of a child with autism is over protective that gets held up as the rule.

Just like the non – autistic population, the autistic population is also very diverse. There are people with autism who are of a very even temperament. There are others who often have very challenging behaviours such that there are families who have never stepped out of their homes altogether. These same children might on sudden occasions be angels. As a result the autism sector is routinely judged, not by all of course, but by many, even in the disability sector. The disability sector suffers from what we jokingly refer to as ‘the little knowledge syndrome’. As in, a little knowledge is a dangerous thing.

D.N.I.S.: Post the U.N. Convention on the Rights of Persons with Disabilities (C.R.P.D.), what has changed for the autism movement in India?

Merry Barua: Autism is not really in the mindspace of policy makers or implementers. It is hard for most to see beyond physical and sensorial conditions; and autism is way too complex and invisible for people to get a grip on. This comes back of course to lack of awareness. So while a few autism organisations keep pushing for sensible changes, the professional field is still either strongly negativistic or foolishly dismissive of the complexity of the condition; in turn colouring parental understanding of the person with autism.

D.N.I.S.: As an expert on autism, what are your views on inclusive education and the controversy around home-based education?

Merry Barua: Firstly, I do not consider myself an expert on autism. I am just some one with many years of hands on experience with the entire spectrum. But that still does not make me an expert and certainly not on something as complex as autism.

As for inclusive education, that's what every child has a right to and should have access to. But that does not mean lumping all children in one classroom, throwing in a few add-ons and expecting all the children to learn. Inclusive education in India is all about geographical inclusion and at the cost of inclusive development. The bottom line is that the child with autism has the right to the kind of education that the child will benefit from, and not one that some ‘expert’ decides is the best. Children with autism – like other children – have the right to a continuum of services. What is most disturbing is to say: “All children must only be in mainstream classrooms. All else is bad. Oh, is this child not toilet trained? Does he run around a lot and cannot sit still and disturbs the whole class? Okay then we give them home based intervention.”

Every child has the right to go to a ‘school’. And every parent has the right to two or three hours of respite from caring for a child. Home-based education is neither good nor bad. It is how it is used, for whom, and with what motive, that makes it appropriate or otherwise.

D.N.I.S.: What is the scenario for education and employment of persons with autism in India?

Merry Barua: Briefly, poor, and very poor!

D.N.I.S.: What are the major challenges surrounding the autism sector in our country today?

Merry Barua: While things have changed a lot in the last decade, these are merely the first steps in a very long journey. Some of the greatest challenges continue to be lack of understanding of the condition especially amongst those with the power to do good as well as bad, the lack of services, and the proliferation of snake oil salesmen who feed on this scenario.

D.N.I.S.: What do you think is the way forward for the Government to create a more inclusive environment for persons with autism?

Merry Barua: Create awareness across society of all disabilities and of course of autism. Laws alone can never work because the implementation has to be by people drawn from this very same uninformed society. Acceptance of diversity can only come from clearing away the cobwebs of ignorance. While our Governments do not cover themselves in glory, I do not subscribe to expecting the Governments alone to bring about changes. We have to address also the ignorance, lack of knowledge and true understanding of diversity that is common within our own disability sector.

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