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Submitted by PatientsEngage on 22 February 2016

One of India’s first assisted living centres for adults with autism, Arunima, located on the foothills of Himalayas in Dehradun, was started by Aparna Das. In the following interview she stresses the need to be more conscious about differently abled people.   

Could you tell us a little about Arunima? 

“Arunima” is an organization set up to meet the needs of persons with Autism who have outgrown the “school system” and now have the rest of their lives to look forward to - a life of growth and development, just as all of us deserve. 

Arunima is the first and currently one of the few “Assisted Living” centres for persons with disabilities – specifically Autism. We house 14 individuals on the autism spectrum- truly a range from high functioning to more severely autistic. But we try our best to ensure that life is as “typical”, as different from the approach of institutionalization, as possible.

Does Arunima cater to people with autism of all age groups or only children? 

In fact Arunima is set up for people above 15 years of age, so teenagers and adults, not children.

What is the biggest challenge of raising children with autism? What has been your experience?

Probably the lack of awareness and understanding in the community.

If there is a child with autism in the family, what are some of the things one should keep in mind?
Here are a few things people with autism wish you knew:
1. Not all people with autism are the same. If you’ve met one individual with autism, you’ve met one individual with autism.
2. We’re not all are math geniuses (i.e., “Rain Man”).
3. Being unable to speak doesn’t mean you can’t communicate. About 25 percent of people with autism today are nonverbal, yet they can be highly intelligent (like best-selling author Carly Fleischmann).
4. As much as you spread awareness for autism, we also want you to spread autism education. We want to be accepted for who we are and not seen as a label.
5. Kids with autism will become adults with autism. As much as we’d love to emphasize children on the news, we want you to know that autism is a lifelong disorder. We don’t want to be forgotten when we become adults, because we don’t grow out of autism.

Is it possible for autistic children to be educated normally or do they need to be sent to special schools?

Since Autism is a spectrum condition, some people with Autism can live a fairly regular life and yes, go to a regular school. And, then others, who are more severely autistic will do better with specialized services.

Can people with autism live an independent life? How does Arunima train people with autism to live on their own?

Yes, persons with Autism can live independently. We work on what we call “life skills” as these are the ones persons with Autism will eventually need if they were to live independently. Some examples are: communication, safety, travelling and others.

Do you think the mindset of parents with autistic children needs to change to allow their children to live more independent lives?

Yes, definitely – not all parents, but most. Overprotecting is only detrimental in the long term. We are finite. We will not be around forever. So it’s better to let go when we can watch and guide from a distance than be forced to let go forever, when we are no longer around.

Is marriage a possibility for people with autism? What are the challenges? Does Arunima support process of socialisation?

Yes again, depending on the level of functioning of the individual we are discussing. Autism is a condition that impacts social skills, sometimes significantly.  So a challenge for even a high functioning person in a relationship would be to follow the social rules that go into making a relationship successful. Knowing what to say, when to say it, when something is not appropriate, and what is the “right time” – these are probably nuances of social behaviour that a person with Autism would struggle with. Yes, we certainly do support the process of socialization.

Does Arunima help people with autism become employable? 

This is an area we are working towards. We already have a sheltered workshop where our service users learn appropriate work behaviour. Some of our students have enrolled in a multimedia training course to develop skills that would help at least some of them gain meaningful employment later. And we hope to collaborate with other small businesses that would be willing to employ our service users.

One of the objectives of setting up Arunima was to educate the community? What steps are you taking to create awareness about autism in society?

Mainly being in the community. Greater visibility of persons with disability is the need of the hour. I answered a question earlier that asked about the biggest challenge faced by parents of persons with autism. Not just autism – but disabilities in general. We have had some really difficult experiences with people who did not want us around, but we have had many good experiences too. For example, the other day one of our boys at the grocery store went to pay at the checkout line. He was unsure of how to wait for his turn, but the others in the line were calm because a staff member was instructing and reassuring him from a little distance. And when it was his turn finally, the check-out clerk was extremely patient, and even obliged the service user who saw a toffee (in the change box) and asked for it. Rallies demanding recognition are good, but only part of the awareness plan.

Could you suggest a few ways in which we could make our society more inclusive for people with autism to coexist?

I feel like this has been covered to some extent in the previous questions, but I would invite people to be more accommodating of differences, give our persons with autism a chance, and learn more about differently abled people in order to take care of the one factor that acts as a deterrent in many cases: the fear of the unknown.

See the youtube video on Arunima below 

 

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