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A Mother’s Perspective

Mrs. Bushra Suhaib

My son Amin was diagnosed with Autism at the age of two while my husband Suhaib was posted at Karachi. We hardly noticed any problem in Amin’s development during the first 22 months. He had no speech but I did not pay much attention to it because my elder son also had delayed speech. Just before his second birthday I noticed that Amin, who was quite playful and responsive, started to become blank and was not responding to any commands. From there onwards I noticed that he was not even responding to his name and his responses were regressing. I also noticed that Amin had become hyperactive. His sleep was disturbed and he would cry excessively. We took him to a pediatric neurologist and for the first time we were told that Amin has “poor eye contact”. The doctor suggested that Amin probably has “autism”, a term that was new to us.

Autism is a neuro-developmental disorder whose incidence has increased significantly in the recent times. It is four times more common in boys than girls and is typically discovered around two to four years of age. There is no physical difference between a child with autism and a typical child. The only differences are behavioral. These children lack the power to communicate with their environment. The behavioral problems often arise from the child’s inability to communicate and express needs. Most children with autism are not mentally retarded. In fact many of these children possess exceptional rote memory.

Once Amin was diagnosed we started searching for his treatment. A lot of encouraging information was available on the internet. Our hopes were soon crushed when we discovered that there were hardly any facilities for autism even in a city like Karachi. At age 2¼ we decided to take Amin to a school and fortunately a Montessori in the vicinity accepted him. After about nine months the school staff, being untrained to cope with such a child, refused to keep Amin as other children were being distracted by his behavior. It was a very distressing time for us. After that I decided to work with Amin myself. Suhaib was mostly busy with his job and I used to take Amin to various places for occupational and speech therapy. I learned a lot from Amin’s training sessions and by reading relevant literature on autism. I also started home tuition sessions for Amin. This was a real tough time as Amin would cry a lot and was very uncooperative in these sessions. In spite of the pains taking efforts Amin’s progress remained slow. But I did not lose heart and kept on pursuing Amin’s training. I also did online courses for managing children with autism.

When Amin was four Suhaib was posted to AFIP. The facilities at Rawalpindi and Islamabad were even more inferior to Karachi. An unmanaged child with autism by age five is usually very aggressive, restless, and unresponsive to commands. They have no clue of their environment and suffer from a lot of sensorial issues. But due to my sustained efforts in keeping Amin involved in weekly sessions of speech and occupational therapy his performance showed slow but progressive improvement.

Amin is now fifteen and in the past several years at Rawalpindi he has been undergoing regular training sessions. As a result of the years of hard work Amin’s comprehension has improved and he is lot more functional. He is able to enjoy life with us. He loves watching TV, outdoor activities especially car rides, swimming, boating and eating out in restaurants. Whatever work I did on Amin was based on “trial and error” basis. Had Amin been managed with a comprehensive intervention program his functionality would have been a lot better.

Autism is as common in Pakistan as it is anywhere else in the world (approximately 1 in 65 in the US). Most children with autism in our society remain undiagnosed due to the lack of awareness and expertise in diagnosis. Many parents prefer to hide such children. The parents often suffer silently and perhaps more unfortunate are the affected children who have to bear the brunt of being sick as well as being mishandled. Another unfortunate fact about autism in Pakistan is that even in the special schools these children are often placed with the other mentally handicapped children.

The agony of not finding help when required and the high cost of therapies prompted us to establish a centre for children with autism. Our ambitions were strengthened by concerted efforts of another affected couple Ghazal and Qaiser Nadeem and dear friends Farida Kingravi and late Mr. Nadeem Anwar. In 2010 we decided to start a centre for autism where we could provide complete solution for diagnosis and therapy under one roof. Since the treatment is demanding as well as expensive, we aimed to provide maximum facilities at minimal cost especially for those who were unable to afford it. Finding trained therapists was our biggest challenge. Fund raising was equally difficult. With the blessings of Allah Almighty we were able to collect enough money to hire a decent place at 552 Aibak Road Westridge, Rawalpindi. We named the place as Autism Resource Centre (ARC). The ARC formally started working in Jan 2011 under the umbrella of Autism Society of Pakistan (ASP) that is registered as a non-profit organization. Starting a centre from scratch was an uphill task especially with bare minimum resources.

The past five years of ARC are a relentless story of team work by a core group of dedicated, hard working and fully committed individuals. We are lucky to have the services of Ghazal Nadeem whose exceptional performance and innovative ideas helped us in building ARC as a centre of excellence comparable to any international standards. Today ARC has blossomed into three separate branches housed in separate buildings. These include “Ali Rafay Early Intervention Centre (AREIC)” for the young children, “Nadeem Rehab Centre (NRC)” for the older children and “Amin Remedial School (ARS)” for the slow learners. At present we provide treatment facilities to over 100 children and we have a fairly long waiting list. We have employed and trained a core group of qualified therapists including special educationists, ABA therapists, speech therapists, clinical psychologists, occupational therapists, and physiotherapists. Each child also has a teacher aid. ARC provides wide range of services including initial assessment, intervention comprising behavior modification therapy and applied behavior analysis, speech therapy and physiotherapy etc. We also provide counseling facility for the parents. We have also developed home-plans and short term training facility for the mothers who come from far off places. We also hold regular training workshops for our staff.

ARC is a non-profit organization that was started on self help basis. Autism is an expensive disorder to treat. We provide fee subsidy to 75% of the children. We have children from all walks of life and over 20% of them come from the families of the Armed Forces personal. Alhamdolillah over a dozen of our children have gone to the mainstream schools and most of the children who received early intervention are able to join our remedial school.

Amin could not get comprehensive early intervention. But with the help of Allah Almighty he has been the main driving force for me in creating a huge difference in the lives of so many affected families. Amin has opened the doors of a world that is very real and is full of Allah’s beautiful and innocent angels. But sadly it is a world in which the so called normal people hardly ever venture. In my struggle for this cause I lost many friends because I was not socially available. But a few caring ones stood by me and gave a whole hearted support in the difficult times. I have no regrets because I have met some of the most genuine people because of Amin. He is very dear to me because he has completely changed and enhanced my life. I thank Allah Almighty for having blessed me with such a special child who has been instrumental in bringing a ray of hope for so many suffering families. I keenly look forward to serving these families even better. I strongly believe that Amin is Allah’s homework for us. Whenever we are faced with challenging situations in life, Allah wants us to rise up and meet those challenges to the best of our abilities.

 

shikwa-e-zulmat-e-shab se to kahin behtar tha
apne hisse ki koi shama jalate jaate

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