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Cultural autism

SAP: South Asian parents of children with autism often face social stigma in their family or wider community. What is a good way for parents to deal with that?

Because of the whole spiritual aspect of South Asian culture, I usually talk to parents about accepting what God has given them, and to see the light in that, see the reason in that, and cope with it with that strength. But they do need to have that spiritual background. And if not, I insist to the parents, be they educated or not, financially have the resources or not, to educate themselves to be able to understand. That’s the most important thing. In order to accept it, they need to educate themselves.

SAP: As a South Asian friend or family member of someone with an autistic child, what are some things one might do to help the family?

I think the first thing would be to accept the whole family, the family that has a child with autism, to accept the family as a whole unit and not accept some people out of that unit and not the child with autism. And by accepting I mean doing little things like inviting them over for a social get together, but then making sure that it’s not too overwhelming for that child. Also trying to talk to the parents beforehand and arranging some things for the child so that he would be more comfortable, like having less noise, having maybe a room where he could spend some time alone if he needed to, or checking on what kind of food he would prefer to eat—just showing the parents that they really care and going that extra mile to make it comfortable for that child.

The other thing they can do is actually expose their own children to this child, and explain what it is to have autism and how best to accept that child.

SAP: Is autism something all parents should discuss with their children, regardless of whether or not someone in the family has autism?

I feel very strongly about autism so I would say yes, but I don’t know whether it’s practical for parents to talk to their children about every disability in the world. But if any time they come across the subject, I would say the parents should take the opportunity to talk about it if they are aware of it, or sit with their child and try to find out about it.

SAP: Does the mother of an autistic child play a different role in his/her life than the father?

Yes, there’s a huge difference. And it’s not specific to one culture, strangely. It’s across all cultures. In 90 percent of the cases I see the mother taking up the entire load. It seems like the fathers have a lot more trouble with accepting and dealing with the child with autism. They seem to spend more time at work, and that seems to be the way they think they are providing for the family. It’s sort of different ways of staying away from the child rather than staying with their child—removing themselves from the situation.

Any child, whether he has autism or not, is going to benefit from equal amount of interaction from both the parents, and if he’s losing out on one, it’s certainly going to be a loss 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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