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Facing Autism Twice

By Uttama

I could hear laughter through the door, but I was taken aback. What did I expect? That because the parents I was about to meet had two autistic sons, they would be sombre and serious? Yes, I did. And I admit to this judgmental presumption because I was so powerfully proven wrong.

When the door finally opened, and Sumreen Rais and her husband Rais Azam let me into their world, I was struck by infectious smiles and unending enthusiasm. Their two sons, Zeeshan, 9, and Shahzaib, 13, wandered around the room, every now and then coming and touching my handbag or my hair—their way of saying, ‘Welcome, we’re happy you’re here.’

I felt ashamed, wearing my unbiased journalist mask and falling into the same trap I was telling others not to. As South Asians—and as humans—we judge, we presume, we blur what’s in front of us with our expectations.

But Sumreen and Rais were forgiving. As Pakistani Muslim parents of two autistic children, they were familiar with judgements far more severe than any I had displayed.

Until a professional assessed their first son, they had never even heard the word autism.

“I was surprised,” Sumreen said. “For me it was a new word. I thought, ‘OK what can be the cure for this?’ I was taking it as a disease. I wasn’t understanding it at the time.”

Family members and friends offered their own explanations, one of which was the family’s move from Pakistan to the United Arab Emirates.

“People misguided me by saying, ‘He lives alone, you have separated from us completely,’ so everyone said because you don’t have social things happening the child is getting a defect. People also said, ‘Maybe it’s because he’s the only child.’”

Then Rais suggested having another baby. “People advise that if there’s two then they’ll have a discussion between them. They’ll talk to each other.”

But their second son was also autistic. And the blame shifted to Sumreen.

“You know the families we belong to are orthodox. People blamed me: ‘You must not be talking, you must not be teaching them.’ My first torture was that my child was not talking. Second that people who know nothing, who don’t even know about autism, start giving advice.”

And this not knowing, this complete lack of awareness, is the one trait of the South Asian community that makes it difficult for parents like Sumreen and Rais to be accepted and understood.

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12 Responses to Facing Autism Twice

  1. Nipa January 10, 2010 at 3:59 am #

    This article means alot to me and I am sure it will give great strength to all parents who read it. Sumreen and Rais are truely amazing human beings. Thanks Uttama for penning it down so beautifully and truthfully.

    Nipa.

  2. Yaseen Ghori January 11, 2010 at 7:55 am #

    People are born to enjoy others’ problems, but they inversely suffer from the same if they are theirs. If it happend to them they would have different suggestions and steps for their loved ones. Both, Sumreen Rais and Rais Azam have shown their ongoing stamina in the war of baseless social commments.BRAVO!

  3. saiqa zulfiqar Ahmed January 11, 2010 at 1:12 pm #

    such a thought provoking interview for parents who can’t cop with their special children.I know Sumreen personally she is a very strong person & had been steadfast through all her calamities .
    I know how stressful it is to manage with special kids in a conservative society of ours.both sumreen Rais n Rais Azam are outstanding humanbeings may ALLAH bless them with more courage ,stamina & knoweledge n n reward in hereafter as ALLAH says in QURAN ‘verliy after every stress there is a relief’
    hats off to you both
    love & regards
    saiqa

  4. South Asian Parent January 17, 2010 at 1:30 pm #

    Their story truly is inspiring, and as South Asian parents, they are wonderful role models. We admire their honesty, their endless optimism, and their ability to make peace with a society that constantly challenges them.

  5. Najwa January 24, 2010 at 4:32 pm #

    An encouraging story that anyone with an autistic child in thire life should read.
    great spirit to fight!

  6. Nirmal January 27, 2010 at 5:11 pm #

    This is truly touching even when I am fully aware of this story. Samreen rais is like an aunt to me. I have spent my childhood at her place playing with the boys who have now MASHALLAH grown up to be so handsome. :)

    I have tears in my eyes. I just have all my prayers with them at all times.
    Know this samreen aunty. i love you :)

    Ameen.

  7. Nirmal January 27, 2010 at 5:19 pm #

    And I am so proud of u!

    mwah!

  8. Yasmin January 28, 2010 at 6:37 am #

    May Almighty Allah shower his blessings upon U & your family Sumreen.. My heartiest prayers are always with you… You both are really very special… You are really a strong lady & a role model for everyone out there.. Feel sorry for not being there for U when ever U needed a friend to share your feelings.. But I am always there for U when ever U need me… You’ll always be in our prayers…
    Luv U all..
    Yasmin..

  9. Momal January 28, 2010 at 8:19 am #

    Its so nice to read this,i simply luv u sumreen aunty. I know u had to face lots of troubles in ur life and im glad thats all over with ur strength and courage.MashAllah zeeshan and shahzaib are grown soo much.
    Im glad u guys have settled down well,may all those prob making idiots always stay away from your life and you guys always stay happy.
    Ameen

  10. Mabel January 28, 2010 at 2:46 pm #

    I am so happy to meet this wonderful family…their sons’ SMILES could really brighten a gloomy day…

    Zeeshan is part of my life… thanks for the inspiration Rais & Sumreen!

    God bless you and your family…

    See yah!
    Mabel

  11. Nizar ( Hasan's Dad) January 29, 2010 at 4:45 pm #

    As a parent of an autistic like child I think I can understand and really appreciate the meaning and the value such kinds of kids add to our life.I have met the parents of these two nice kids and their parents in a very recent gathering.They are really wonderful and give me and my family a very big push forward.

    Regards,
    Nizar ( Hasan’s Dad)

  12. Pratima January 30, 2010 at 9:09 am #

    “We are the special people and that’s why God gave us a hard target” This positive attitude of parents doesn’t give stress rather gives more relaxation. So much to learn from Sumreen and Rais. Can solve many problems with such attitude. God bless them & their children.

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