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Cultural autism

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Nipa Bhuptani talks to us about the social and cultural implications of a disorder that is only now beginning to be recognized in the South Asian community. Bhuptani is a Board Certified Associate Behavioural Analyst who has worked with South Asian autistic children and their families for many years.

SAP: What are some common stereotypes about autism that are not true?

People think that everybody with autism cannot talk. Everybody with autism is going to have a really poorly life and is not going to be able to do anything. A very typical question that I’ve heard, especially in South Asian cultures is, “Will he be able to get married?” which I don’t have an answer to. A lot of people believe that people with autism show no empathy, they have no feelings, they don’t love their parents or people around them, and that’s a stereotype that is not true.

The thing about autism is that when you know one person with autism, you only know that person with autism. It’s so different from person to person that any stereotype is never going to apply to every person with autism.

SAP: What are some aspects of South Asian culture that act as obstacles to people with autism?

What I’ve seen in the culture is that we have certain very strict social rules; expectations of social behaviour are much higher and the acceptance of anything away from that is very low. So you’re working on a very strict schedule where you have to do ‘this, this, this’ to be socially acceptable, and for people with autism, social interaction is a big issue. They really are not able to do that and they have issues with that, and that’s where I see the big fall out.

Even as parents who know their child has autism, they still expect their child to be able to participate in social events appropriately, and there’s a lot of things going on at social events which a person with autism might have difficulty with. In other cultures I see that acceptance, that tolerance for behaviour that is a little bit away from the norm. But in South Asian culture it’s not there.

Quote3And then with joint families, people like in-laws or grandparents, everybody having a say in the child’s life really makes it very difficult for parents to cope. There’s a lot of social pressure from relatives and friends that makes it very hard for parents to accept their child the way he is.

SAP: And what are some of the advantages the South Asian culture brings?

A close family and friends network. Sometimes parents get a lot of support from that, and they can fall back on their relatives and friends for respite care, for support, for emotional support, financial support—all of which I have not seen in other cultures as much so.

SAP: Many South Asian parents don’t expose their autistic children to the outside world out of embarrassment, shame, or various other reasons. What impact does this have on the child?

It would differ for every person depending on how affected he is by the autism. If he is not severely affected and he can see that he is not really accepted, that would cause a lot of disturbance for him.

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10 Responses to Cultural autism

  1. Sunita Jariwala January 10, 2010 at 9:48 am #

    Hey Nipa,

    Great article and an eye opener. I’ve a friend here who has a son with autism and I’ve seen her go through the problems of being excluded by friends & sometimes communal events because of it. And it is sad and difficult for her at times. But the best thing she & her husband have done is inform themselves better so they can make their son’s life more fulfilling. It also affects the siblings because they have to bear the brunt of jokes lots of times.

    Great work & keep it up.

    Sunita

  2. dimple January 10, 2010 at 11:46 am #

    Good work Nipa! This will help many parents and the society around them to accept autistic children.And help to work with them in a positive field.

  3. Anonymous January 11, 2010 at 8:08 am #

    As someone who has not really had any personal interaction with an autistic person, this was a great source of information.

    I really liked how you explained how each person with autism is Very different from anyone else with autism. I would imagine this would be very difficult in South Asian communities, because the tendency to compare one’s children with others is so high.

    What I also found very interesting, but not surprising, was the mentality of being reluctant to seek professional help – this comes up with many issues, not just disabilities.

    For years, I have seen relatives and friends take pity and pass judgement on anyone who has disabled children, and it frustrates me that people remain uneducated but feel they have the right to judge and critique. I think anyone who finds themselves doing that should ask how they would feel if it was their child.

    Thank you to South Asian Parent for helping raise awareness on autism. I look forward to reading more about this and other issues!

  4. Mansi January 12, 2010 at 1:35 pm #

    Its a great article nipa. actually an eye opener..as I dont know anything about autism and difficulties parents might face. It surely will help us all accept it more easily.
    great work!

  5. merry January 16, 2010 at 8:00 am #

    great going nipa. excellent interview!

  6. Nipa January 25, 2010 at 5:36 am #

    Thank you to all for your comments on the article. I would like to acknowledge Uttama’s beautiful writing of the article which makes it such an easy and interesting read.

  7. Jowyn Tan March 23, 2010 at 10:07 pm #

    Really interesting article. Glad to see that the awareness is spreading. We are organizing the 1st World Autism Congress here in Hong Kong in less than 2 months. All interested parties please have a look at the organizers web: http://www.worldautismcongress.com

    If you would like to attend, get in touch with me: jowyn.tan@mphk.com

  8. padma June 16, 2010 at 7:49 pm #

    Due to misunderstanding and spectrum of disability in autism, I am conducting study based on this subject, but I need help.
    My study explores the Asian families’ everyday experiences in raising
    children who have been diagnosed with Autism Spectrum Disorder (ASD). I like to discuss these experiences from parents who originate from Souther Asia- Afghanistan, Bangladesh, Burma, Indian Sub-continent, Pakistan, Nepal and Sri Lanka.
    If you are a South Asian parent of a child who has Autism Spectrum Disorder in San Diego and Orange county region and would like to participate in this research project, please contact me through my email. My e-mail is bhatpadma2@aol.com. Your time and contributions to this research project will ultimately prove invaluable for future awareness regarding Autism, as well as helping other parents who find themselves in a similar situation. Thank you.
    padma

  9. Jesse Lam September 20, 2010 at 2:42 pm #

    Hi, I read your article and have found it very helpful. I am a doctoral student currently working on my dissertation, specifically targeting Asian American mothers raising children with autism. I am having great difficulty finding literatures that have targeted this demographic and would greatly appreciate any directions.

  10. Bevi Sandhu September 29, 2011 at 2:52 pm #

    Hello,
    This website is brillant. I have a son who is 20 years old now and has autism as well as ADHD, severe learning difficulties & epilepsy. Its been a very difficult and heart breaking experience for both of us in our journey. I studied psychology as a result at Roehamton University which include a autism module. In my second year i took a seminar on how is was to live with someone who had autism and presented my son. I wanted the future psychologist to know that autism affects people differently and that they have a personality (which was clearly shown in my video of my son, who is very affectionate and loving). In 2009, I investigated how south asian parents perceived her child’s disability and how the community affect the family as my dissertation, the results i found were very disappointing and heart breaking. In essence. these families found no help or assistance from their communities, and alot of the families found that they became isolated from their own communities. It is considered that people who have disabilities are being punished from a previous life (karma and reincarnation). This was very sad, but something that i also found in my own experience. This seriously needs to change NOW.
    Thanks,
    Bevi

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