Research on Autism Spectrum Disorders (ASDs) in Asia, Europe, and North America posted an approximate prevalence of 0.6% to over 1%, while the latest data from South Korea reveals a prevalence of 2.6%. How would you describe the status of ASDs within the GCC? What support services are available for those suffering from this disorder?
Support services for people suffering from ASDs became available during the 1990s. Before that, you would be hard-pressed to find anything. In my case, I scoured the whole of the Arab world to find some form of ASDs care for my daughter and found nothing. Even the specialists during the late 1980s who began looking into autism did not know much about it. It was not even included in the medical studies in the Arab Universities. That was then.
Things have changed significantly in terms of ASDs support services. People are more knowledgeable about the subject. It is included in the university studies. There is a lot of research dedicated to it. Indeed, the desire to understand and create services for those suffering with autism is there, at a level that did not exist during the late 1980s and the early 1990s.
On my end, I tried to work with some of the universities studying ASDs; including those based in Kuwait. We have medical students visiting the school and I facilitate in terms of training venue and the like. I help them so they can do their research and get a better understanding of the subject. It is not official yet. It depends on the professor, and whether he or she allows the students to go through the program as part of their practicum. It is not yet part of their curriculum, but I am optimistic and working towards changing that. These visits are very useful for the students and the status of ASDs care in the country. We could be hosting visits from Pediatricians, Neurologists and other medical specialists with a concentration on autism. This is something that a number of us are hoping for in our medical universities.
You pioneered the first initiative in the GCC for ASDs.
Here, we believe in a sort of voluntary tax—what we call zakat where 2.5% of what we have should be given to those in need. My involvement in all this was mostly a blessing from God. I was fortunate enough to have had the time and the resources, as well as a loving husband who supported me in every step of the way. I was encouraged to go to Boston University and pursue my masters in Special Needs. Later on, I earned a doctorate degree from Leicester University in the UK.
Some time between the late 1980s to the early 1990s, I set up a small classroom in my house dedicated to ASDs. It was the first of its kind in the Arab world, and was mostly fueled by the desire to understand more about the disorder. My daughter was my inspiration. We had to push for this initiative because nothing else was available for those with ASDs.
When I had to move to Saudi Arabia, I set up the same thing with Al-Faysalia women society. It was a humble outfit with a lot of heart, and was a more formalized version of what I had back home. They were called “Friends Classrooms” because I believed that the kids needed friends.
It was in 1994 that you started the Kuwait Center for Autism (KCA).
Yes, it was. Through the patronage of the Kuwait Endowment Ministry, I established KCA. Because of the studies and the groups that I have formed both in Kuwait and the women’s society in Saudi Arabia, I knew exactly what we needed. This knowledge had a lot to do with making the Ministry grant (and the donations that we have received) go a long way in furthering our program.
We understand that you founded the Jeddah Center for Autism (JCA) a year before that.
Yes, that is correct. I have applied everything that I have learned from previous study, and from the formation of the JCA to the establishment of KCA. In 2002, I pushed for the creation of the Gulf Autism Union (GAU) to further strengthen our cause.
Your passion for addressing the issue of ASDs is admirable. To this day, you are an active researcher for special needs. Several of your works have been published in scientific journals and presented in conferences.
The bottom line is that I was blessed and I had to give some back. This was (and continues to be) my way of doing exactly that. I have made it my mission to reach people and contribute to the body of learning in ASDs. It was all about being able to learn more and get the word out. Communication was (and is) key.
The creation of KCA in 1994 was a stepping stone that allowed me to invite ASDs experts (e.g., medical professionals, authors, researchers, and so on), the world over. Of course, they were initially apprehensive about coming here because they did not know much about the country. For those who did come, they were quite happy about it.
How would you describe the country in terms of how visitors are received?
They can just be themselves. They are a guest to our country. We are very generous and courteous when it comes to foreign visitors. This is how it has always been. Even if they do make a mistake, we just brush it off because they are our guests. We understand that they come from a different culture, and so if you do not know about our customs, it is fine.
Getting people informed (particularly, those whom I have invited—global ASDs studies pioneers) has always been part of the itinerary. They come here and I show them around. I tell them that it is okay. I go out of my way to make them know more about the country so that they would feel at home here. That is the goal.
I take them from wherever they are (e.g., North Carolina, Australia, etc.) to places here in the Gulf; particularly, Saudi Arabia and here in Kuwait). I show them the ropes. We had more than 70 guests between 1994 and 2000. It was a lot of work, but I was able to procure all the needed papers, including their visas, through the assistance of the Ministry. I could not have done all this myself. It was through the good graces of the people whom I have become acquainted with that I have managed to get this far. Even our current Emir was supportive (back then, he was still the Prime Minister). He approved my proposal of a first and a second conference way back in 2003. My idea was to make these conferences coincide with Kuwait’s February festival (to celebrate the country’s liberation), and give our guests (and their families) something fun to look forward to after the conferences. His Excellency’s patronage encouraged a broader support network.
The first two conferences set the pace for future ones.
Yes, they did. We decided to take the opportunity to listen and learn from our guests during these first two conferences. In fact, we only started to showcase our own projects and findings during the third conference.
It was a pretty bold move.
A number of local people were upset with me because they initially wanted to be speakers during the first two conferences, but I was keen on making sure that we all took the opportunity to learn from the experts. That was what the workshop was for, after all. We wanted to enlarge the body of knowledge that we had about autism.
To my mind, taking a step back to learn from the experts was a good move because it would allow us to do more for the region. By the third conference, we already have something solid to share. The first two conferences were all about equipping ourselves to make things better in the homestead.
The first part of the project is always very challenging. We imagine that you have experienced some amount of difficulty during the genesis of KCA.
Yes, it was rather challenging. We had some delays because I needed to source funds. Apparently, the initial KD1.5 million that we have estimated was not enough for the project. We needed to raise KD2 million more. It took a good 5 years of finding financiers, acquiring the land, and getting things set up. Even then, I fell short by KD500, 000. Basically, I collected the money and gave it to the Ministry (endowment) so that they could mobilize the construction of the center. That was the agreement from the beginning. I would give them the funds so they can handle its management and investment. I wanted to distance myself from the administrative side of the funds as much as I could. The best way to do that was to let the Ministry handle expenditures.
I was in a bit of a pickle because to get more financiers, I needed to show them something solid. However, the nature of the project made it impossible to start construction if the whole amount has not been raised. Unlike private projects that do not require the full amount to get things started, the Ministry required the full amount before we could lay a single brick. It was the law. Of course, my husband was creative enough to come up with a solution. I was to write the payment order equivalent of the amount to be donated as a guarantee. This move demonstrated my faith in the project and encouraged more people to participate. In the end, we got the funds that we needed (and more).
To this day, I still have those payment orders. I use them to teach my children about the value of determination and ingenuity. I keep on telling them that we can always find a way to make things work, even when things seem to be working against us. If a wall blocks our path, we need to fit it with a window to further our cause.
In terms of KCA, it was through God’s good graces, my husband’s ingenuity, the Ministry’s willingness to give a hand, and the kind hearts of our donators that we have managed to get to this point.
What motivated you to set up KCA? Where do you want to take it?
I saw that many parents were going through the same challenges and difficulties that I was going through. I knew how they felt. I wanted to have more autism support services available for these people (e.g., diagnostic services, early intervention, enrichment programs, special education services available in the area, and other helpful information).
The goal of all this is to help autistic children and their families to improve their quality of life and empower them to function within society as best they could. It is a way of affording them a chance to a normal life. Seeing their children thrive is every parent’s dream. We still have a long way to go, but we are off to a good start.
British Institute of Organ Studies Founder, the late Rev. Bernard Edmonds once said that the beauty of the human mind is its capacity to dream.
Some days, I wonder if I want too much. I once saw footage on CNN of some women in Somalia gathering bits of wheat on the ground (those that fell from the passing trucks). They would pick off the rocks that came with the wheat and cook it for their children. Their dream is to be able to feed their families.
I think God gave us the capacity to dream so that we have something to strive for. People are unique creatures—as vast as the universe and as tiny as the human body. Within our vastness lie our hopes and dreams. They allow us to do things. They could be as simple as a parents’ innate desire for their children to succeed, or as elaborate as world change.
Here in KCA, we dream of making the lives of those with autism better.
How does KCA intend to achieve this dream?
We intend to improve the lives of those suffering from autism by providing a special education/ASDs support model for others to follow (i.e., how schools should be for specific age groups).
KCA is the formalized version of the movement that I have started with others during the early 1990s. We follow corporate protocols. We offer training programs for the teachers and the parents. We equip those looking to start their own centers with the knowledge that they need to get things off the ground. After all, it is impossible for KCA to take everybody in. We need to encourage similar centers to be made available in other parts of the country and the region.
In terms of early intervention (for children 3 years of age), there is a parent assistance program where we make house visits and inform parents about the kinds of programs they can use for their children. The project itself is quite challenging. It is very hard to find people dedicated enough to reach out to those kids. It requires a lot of effort to follow everything, have great attention in the classrooms and read their observations.
Extra programs mean extra responsibilities. Due to certain limitations, we cannot offer this type of home service to all of the parents. However, we do try to accommodate as many as we can. We do this sort of thing twice or thrice a year. We have experts with us to help us do these in-house training and evaluation programs.
For children 10 years of age, we show them the kind of classroom that we have. For children 14 years of age, we have rooms for high functioning teens with Asperger’s Syndrome. The assistance for these types of kids mostly has to do with communication and social integration. We help them get back to the normal classrooms and relate with their peers.
The challenge lies in coming up with programs for adults. We have 2 adult individuals who are working in the KCA. They serve as an example of how adults with autism can function in society. I have done the groundwork and am now waiting for somebody to take the helms. It is a big project that requires the utmost attention.
What are you working on, at the moment?
Right now, I am working on a curriculum to cater to children with autism. It can be used in any classroom, and any home study program. Any parent can use it. He or she can start activities with his child, at any level, and work his or her way up very quickly. This allows them to work independently, with very little mediation (only to assess if they are doing it the right way).
Where do KCA’s funds go?
Everything that we get from our programs and activities go to the Autism Endowment Fund (AEF). Right now, it amounts to KD2 million. I do not utilize the assets AEF, but the revenues that we derive from it.
The AEF is registered in the Ministry of Justice. It is managed by the government. It cannot be used for anything other than autism-related programs and projects. This is to ensure that the project will go on, way into the future. Perhaps we can count on the younger generation to eventually participate and take the reigns.
What is your goal for the AEF?
My goal is to reach a total assets of KD10 million. I have KD2 million now. I need KD8 million more. Of course, I am not too focused on it at the moment because I want to finish the other facilities first.
What are your future plans? You mentioned coming up with an extension that caters to people ages 20 and up.
One of the things we are working on is data gathering. We are working on deriving accurate statistics for autism (e.g., people affected, services available in each of the Gulf state, etc.) within the region. It is a collaborative project under the GAU. The GAU has a representative from each of the Gulf state. We are unified in our goal of getting a clear picture of where we are now by having the exact ASDs statistics per country.
I have been getting in touch with people like Princess Fahda Bint Saud Bin Abdul Aziz (daughter of the second King of Saudi Arabia) and Sheikha Jamila Al Qasimi from the UAE. We also have other prominent persons from Bahrain & Qatar and Oman.
We intend to go to the Minister of each country as a group to present the study. We do this in the hope of motivating them to do something for their country.
We need to build on what we have right now. We cannot go back to where we were 20 years ago. We need to move forward, and we need to do this quickly.
How would you assess the feedback that you have had so far?
So far, the response has been positive.
How many people work for the KCA? How many children does the center cater to?
In terms of the center’s direct services, we have about 120 kids. About 25 of them come in the afternoons, but the rest are here in regular school. We have about 80 people in staff working with these children. During the year, we get specialists and consultants from overseas (e.g., the US, the UK, and other parts of the world). For instance, we have a Professor in Behavior Services coming next week. He revises the Behavior Plans and he trains the teachers. We also have a Diagnostic Team that comes on a bi-annual basis. We have Music and Art Therapists coming in.
Specialists come and train our staff through workshops. Sometimes, the stream continues to flow, and sometimes it is blocked because I could not find someone to manage that particular program.
Silent Scream is a bi-monthly publication in Arabic which features ASDs-related stories (e.g., articles about the students, information about conferences, details on ongoing workshops, etc.). What was the inspiration behind it?
Often, I would hear people complaining about not having materials in Arabic. This is my attempt to keep Arab-speaking people informed about our projects, our students, and the workshops they can attend. We want to make people familiar with the facts about autism.
What other activities are you involved in?
We have a yearly marathon (which we unfortunately did not get to do it this year because we have been busy with the opening of KCA). In 2005, the then Minister of Health Sheikh Ahmad Al-Abdullah Al-Sabah participated in the marathon and he continue till now running with us for the cause of autism.
We would always try to reach people, wherever they are. Apart from having the media cover the marathon, we would also hold it by the “Love Street” young people frequent. That way, they get a visual of people with autism even while they are busy with their own activities. This helps us spread awareness.
The KCA will be hosting the International Autism Congress 2014 in Kuwait.
Yes, these are truly busy and exciting times. Our slogan is “let’s make a difference”. My son chose this. He told me about the importance of choosing a small sentence with a big meaning. We talked about it and ended up with “let’s make a difference”. I had my other son (who is now studying IT in the US) to come up with the illustration. Each element in the logo means something. You have Kuwait Towers, people of all ages, and hope (represented by flowers). There are the blue skies gradating from light to dark. The darker portion has rain. Here in the Arab world, rain reflects happiness, hope and prosperity. It is a positive image. The lighter portion symbolizes the normal skies we have right now. Basically, it is saying, “rain is coming, do not worry”.
We want to make a difference in people’s lives. We want to make a difference in the way autism is perceived. We want to make a difference in the kind of knowledge we have about the syndrome, and the support services we can offer.
You have accomplished much in the field of autism. Your daughter has been a strong inspiration for you.
It is true that we cannot all be like Mother Teresa. What she had were the tools in her hands and the determination to spread her mission of love.
In my case, it was through the grace of God, the encouragement of my husband, and the support of my family that I managed to carry out my mission in autism. When we were in the US, my husband was a huge help. He helped me cook and do chores. He pushed me to pursue my dream. My mother offered to take care of the other kids while I attended to my daughter with ASDs. My mother told me to carry out my mission.
It was not always easy. It took an amount of patience not to give in and go back to my family (whose presence I missed when I was in America). We kept in touch and constantly communicated to bridge the gap. I studied even during the time when my family visited me in the US so that I would have extra time.
Without their support, I do not know if any of this would have happened at all. My husband and my family were all important pieces of the puzzle that made this a reality.
The situation I found myself in pushed me to do what I did. The gifts and resources given to me by God made sticking to my mission paramount.
I am not here on my own. Nobody is ever on this world alone. What I have done so far is the culmination of all this.
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