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Cultural autism

SAP: If a South Asian parent absolutely cannot cope with the demands of his/her autistic child, what should he/she do?

The first thing to do would be to seek help. Autism can be extremely overwhelming. Every parent is going to have a time in his or her life where it’s going to be too much. And that happens to regular parents so it’s OK! If it gets too much, seek help.

I believe in having a confidante, having somebody you can talk to who is not going to judge you for what you’re saying. Surround yourself with people who are willing to accept you, even if they are a few, instead of wanting to have many friends who are not going to take care of you, have a few who will be there for you. That’s the first thing: seek help.

If social networking or the social part of it is not enough, seek professional help.There are counsellors; there are people who can help you out with this. It’s OK to take a day off in a week where you cannot deal with the child anymore and you want to get out—that’s perfectly normal.

The whole South Asian culture takes you away from that a lot because the mother is not supposed to be away from the child for that long; again that really makes it very hard for parents to come out in the open and say, “Well I can’t deal with this. This is too much for me. My child is too much for me.”

SAP: But seeking help is sometimes difficult, particularly for South Asians.

Yes, unfortunately there’s a huge taboo on seeking help. That’s a show of weakness in the South Asian culture. Seeking help means you have to show that you’re weaker, and that becomes difficult for parents to deal with. It would be a big help for people to overcome this taboo of asking for help. It would help the parents in a big way. It would include other people into their problems, make them aware of what they’re facing, and that would ultimately help.

SAP: Is it ever OK for a parent to give up responsibility for the child to another person for the long term?

That can be very hard, but if it comes to the hardest of choices that you have to make where you cannot, absolutely cannot deal with it, and you’re medically declared unfit to deal with it, you have any sort of psychological problems, yes, then the best other option would be for somebody else to care for your child.

But in that you really need to look at advocacy for your child, your child’s legal rights, look at the child’s future, how efficient is the carer going to be, how interested is the carer going to be in the long term, etc.

SAP: What are some unique challenges faced by South Asian parents of autistic children who live in their home country?

The thing I feel that South Asian parents struggle with, especially in India, Pakistan, Bangladesh—places where there is no government support—is that they have to struggle a lot for financial help, and for education even, because there’s not enough availability. They’re constantly fighting that battle.

SAP: People tend to focus on the drawbacks of autism. What are some of its positive aspects?

People with autism can be very loving, very sweet, very truthful. So if you want to know their opinion and if you’re willing to accept it, that’s the only time you should ask them because they will tell you the truth. If you say, “How do I look?” they will tell you, “Fat.” They don’t mean to be rude, but they say it exactly how it is. And I think that’s a great quality to have.

So looking at the good side, there’s so much joy in having a person with autism around. I work with people with autism every day, and every day we have something that we can laugh about, something that we can feel great about.

SAP: What are some support groups for South Asian parents of children with autism?

Action for Autism

www.autism-india.org

Forum for Autism

http://forumforautism.net

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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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