Thursday 27 March 2014

Autism- Living It

As I was waiting for my order at the fast food place, I noticed a father tenderly asking his six year old what he would like. The child kept fiddling around with his fingers not even looking at his dad. Immediately, I knew something was different about him. In a second the boy ran away, but the father just kept calm with one eye on his son. The boy came back in a couple of minutes. Again his father asked him something so gently in his ear, yet the boy was lost in his own little world. As the couple went off, I looked at them with wonder and as a tear trickled down my cheek, I had nothing but total admiration for the patience and compassion this father had displayed. I realized that this must be a case of autism.


In view of this highly misunderstood condition and it being World Autism Awareness Day on the 2nd of April, Mrs. Amina Asad, who is a member of UAE Mums Group  and whose child has Autism, has kindly accepted to lend her insights on what it encompasses and the impact it has had on her and her family. I appreciate and thank her for coming out on such a personal issue for the sole purpose of enlightening us.


Abdullah Asad is a handsome young 13 year old teenager with an eleven year old sister and a six year old brother. His father is often away due his job requirements (but is hands on when at home) and his mother handles the intricate and often trying details of the day to day routine. But Abdullah has a condition called Autism. This is what his mother has to say:

Q1. When did you first realize that something was not normal?
Abdullah was completely normal till the age of two, babbling and playing but around the age of two and a half I noticed he had gone mute and eye contact had deteriorated. After the birth of my daughter, he became hyperactive near the age of three. One day he jerked his hand out of mine and ran onto a busy road taking no heed of cars or my yelling out his name again and again. Since I was still recuperating after the c-section of my daughter ten days prior, I could not run after him quickly enough and my daughter was in my arms. Luckily a man brought him back to me. When I scolded him later, he was totally devoid of any expression like nothing had happened. It scared me. It was then I knew something was not right.

Q2. How was his condition diagnosed and what was your initial reaction?
A relative of mine who is also a doctor referred me to Dr. Singhania for a hearing test. This doctor then finally diagnosed his condition as a low functioning Autistic child. At the start we were pretty ignorant, we thought that he'd take some meds for a few months and then he'd be okay. As we delved deeper and did more research, it dawned on us that this would be a lifetime situation, I was shattered. His father was also devastated. I went into depression for some 6 to 7 months. But this attitude was not going to benefit anybody. So we stopped feeling sorry for ourselves, accepted it and learned how to manage the condition. It wasn't easy.

Q3. What behavioral issues does your child have?
He doesn't talk except for a few basic words which he started speaking at the age of 8. He plays with shiny objects like spoons and CDs. He doesn't like crowds or loud noises. When he is upset he covers his ears. We are still struggling with toilet training. He annoys when he wants attention. He is extremely sensitive to the tone in which people speak. He likes only selected people. Obviously every aspect of his behavior is compromised due to his condition.

Q4. How do you manage his behavior?
We provide a structure and routine. Such children require this more than others. We do not force him to do anything and speak gently. We have to repeat instructions and reinforce everyday etiquette. We have adjusted our lifestyles to accommodate him, cutting down on social gatherings, the siblings keep a watchful eye on him and his father engages him in playful activities, which is how he learned how to count to 10.

Q5. Is it a progressive condition? Does it get worse?
It's stays stable more or less. The basic behavior patterns remain the same throughout life, but with persistence a low functioning autistic child can learn to cope with basic daily activities.

Q6. What are his interests?
He loves being tickled, he enjoys long rides and absolutely adores travelling in planes.

Q7. What about school?
He goes to a school for autistic children in Dubai, but I'm sorry to say that despite the colossal amounts of money we give in fees, we are not getting our money's worth. The teachers change every few weeks, this in itself is counter productive for children. Extra therapy is unaffordable. We had to drop speech therapy that costed 150 AED for just 45 minutes, that too for an unqualified teacher. The whole industry revolving around autism has become one huge business with no regard for the ones who suffer, they exploit our weakness. I had to pull out my other 2 children from good schools and place them in schools that cost relatively less, even then its a struggle to make ends meet. I did not expect a city like Dubai to have such limited resources for Autistic kids.

Q8. Does he take any medication?
He has been taking two types of drugs, one to calm him down which he takes before bed time and one drug to control anxiety. He will be taking these for the rest of his life.

Q9. How has his condition impacted the dynamics of your extended family and friends? What has their role been?
I am lucky that my family has been extra supportive. I don't think that living in a joint family (as is a custom in Pakistan where I come from)  is practical under such circumstances in the long term due to the fragility of the child, but still my family has been supportive and never pulled me down by making pitiful remarks. They always behaved with me as they would with any other person in the family which was pivotal for coping early on. I have a close knit circle of friends here whom I confide in and their cooperation means a lot. There are support groups also that help you with advice and venting.

Q10. What advice would you give to parents who are dealing with Autistic children?
I would tell them not to hide the condition. Many parents do because of the stigma that comes with any disability, especially this one. Share your views and opinions and fears with people who are knowledgeable and whom you trust. Increase awareness. Do not fear what people might say. Create a circle for your child to lean on for the rest of his life and keep up with the latest research on the net. Take it with a positive stride-accept and overcome.

Deep words from Mrs. Asad and I'm sure we all wish her entire family all the best that life has to offer.

For more facts and figures about Autism please visit this link.

For some schools in Dubai for autistic children please click.

For a list of famous people with this disorder (you'll be surprised) click here.

Some support groups in UAE for Autism:
http://www.meetup.com/The-Dubai-Autism-Meetup-Group/
http://www.nipabhuptani.com/autism-support-network-abu-dhabi/
http://www.dubaiautismcenter.ae/
http://autismindubai.blogspot.ae/2013/02/by-zeba-khan-director-of-autismuae.html

For more information you can contact Mrs. Asad:
Email- aminahinabutt@hotmail.com
Home number- 06 5558604
Cell- 055 5589450


19 comments:

  1. Great article... lots of love and wishes for Mrs. Asad. May Allah give the parents loads of strength.

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  2. sabahat hamayun1 April 2014 at 21:59

    May Allah bless our kids with all wellness..Mrs.Amina you are a great brave mother.Allah has chosen you a dear one to Him.i could understand all your feelings & patience as I do hav a 2yr old son left undiagnosed some Doctors relates him to congenital or genetical syndromes some says he is Autistic child. ..but what we as parents do is" we are whole world to our kids & they r world to us"..Our prayers, love,care,attention,patience & devotion to treatment s & therapies will make our kids life easier & successful. INSHALLAH."Sky is the limit"

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    1. What a beautiful perspective Sabahat. May Allah help you and give your child shifa also.

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    2. SUPERB. May Allah Grants us with patience and knowledge so that we can do everything best for our kids.

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  3. Superb article...may Allah give strength & patience to all the mothers...no matter how kids are they are always angels.

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  5. Great Article,Sabahat hats off to u.MA how brave you are,..May Allah SWT strengthen you and Abdullah to come up with this situation..
    Ameen

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  6. Sabahat commented, Rahima (me), is the author :-) Thanks for the feedback.

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  7. it requires so much strength and courage to see ur child in any such situation..may Allah give Abdullah and all the children a good healthy life..my cousin's son is also autistic..and i can truly understand the situation Amina is going through...may Allah bless everyone..ameen...

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  8. My first cousin is Autistic... he is 30 years old! Sometimes when he sits quietly, people think he is a normal grown up. I remember what a bittersweet moment it was for my aunt when she caught a girl glancing at him with keen interest. This lasted a couple of seconds as my cousin started with something and the girl realized her mistake. While I was being told this story, I wondered how my aunt must have felt... amused at first and then a sad yearning settling in. Always on tenterhooks and worrying what would happen to him. No matter how much money you have, I think the thought that a day will come when one (as a parent) will be unable to provide care is always at the back of your mind. And there is an agony in that.... for who better to give care ..or know what a child wants than a parent. My heart reaches out the family and may the Almighty give such families the strength and fortitude!

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    1. This is a sad reality, which is why Mrs. Asad advises to build a strong long term support system, nobody can be as nurturing a parent but siblings, close family and friends have to do the rightful. And we have to make people aware. Thank you for sharing Sabin.

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  9. As I read this a tear trickled down my eye. It took me a second to realise I was tearing up. This interview has touched my heart.

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  10. It really was an eye opening experience.

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  11. A brilliant blog written by a truly gifted writer. A heart touching story and interview. I salute all mothers like Amina Asad, for being so supportive and patient. May Allah give them ajar for this.

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