Dr. Samira Al-Saad has run the Kuwait Center for Autism (KCA) for the past 20 years. Her challenge has been and still is her continued efforts in spreading awareness about autism throughout society. She discusses her work over the past 20 years and speaks about the deliverance of a number of crucial services to autistic children and the KCA’s ability to serve other countries and organizations. She also offers her perspective on the state of the health services available in Kuwait and the ways in which we can motivate people to support such important organizations.
You have mentioned previously that even before the recognition of Kuwait and his Highness, there was the foundation for all of the humanitarian work. Throughout your time working within and outside of the Gulf, what would you say is the identity of Kuwaitis and Kuwait that separates them from others?
During the invasion there was no electricity; people were killed just because they were giving bread; a lot of grenades in front of their homes, it was horrible.
The Kuwaitis identify themselves with giving and humanitarian assistance. I just want you to think about one day, because we never believed that it would happen: one day, August 2, 1990.
On August 1, we never thought that it would happen; on August 2 you have a 360-degree reversal and then, suffering from all what happened here in the interim and after this finished, we thought we would never talk to any Iraqis.
I hated to even listen to any Iraqi songs.
At that time I was in Saudi Arabia, people felt pity for us. Even if you had money in your Kuwaiti bank account it was worth nothing.
So that’s why we care about people who suffer like us now, whether it’s in Yemen or Saudi Arabia or Syria or anywhere in the world.
This is what we know about Kuwait, the real Kuwait when it faces tragedy.
The humanitarian assistance is not related to adults only, but young people too when placed in challenging situations, and something good would come from their experience.
I wish that the government would assume its role to explore those capabilities with its people.
They should challenge them; they shouldn’t provide them with over-the-top incentives, such as every student at university, whatever his contribution or achievement, being provided with financial assistance of KD 200 ($660).
I feel they should work or contribute to society – if they need money they should be given work opportunities, even in the library of the college instead of just getting money.
The work ethics that our future generations encounter through challenge and hard work should be a basic foundation in the making of our society.
Kuwait has state-of-the-art facilities. It’s an advanced country, but at the same time, the Ministry of Health is lacking a little bit, in considering broader concepts of health, new conditions and disorders, such as ASDs (attention spectrum disorders) and other newer developmental or behavioral disorders. What would you say are the main challenges for the health sector to adopt a new concept that includes everyone and not only people suffering from non-communicable diseases and genetic or physiological diseases?
Given that Kuwait is still a new country (it gained independence 55 years ago), its health facilities are adequate but it has a long way to go to satisfy the growing need of the people.
We won’t be better than the United States in the near future. Still, I think I’ve never seen a paradise for developmental or behavioral disorders anywhere in the whole world.
But if we have one serious minister and he lists the basic goals that need to be completed in five years, I think our cry for better services for autistic children would be included among others.
Every individual in society has to be included, especially those with special needs, in order for the plan to be comprehensive.
The problem is that, again, things are mixed up during planning. Like currently, the services including the health services are usually made for 1 million people.
By the time it was made the population had reached 4 million. I lived for four years in the United States and I paid for all expenses in addition to all the services I used when I stayed there.
What do you think needs to be done to incentivize the support and sponsorship for this organization so that it can increase the reach of its work?
There are many ways to incentivize the support and sponsorship for similar organizations to ours so that they can increase the reach of their work.
One approach to increase awareness is through the media and education. Another approach is to incentivize people and civil society to increase their financial aid and voluntary contributions to support such causes.
It’s like in the United States when you have a tax deduction for charity and social support, and any company or bank can fulfill their social responsibility by paying it as tax-deductable expenses.
So there are a lot of NGOs. Here we don’t have the same tax system and tax-deductible items, so it’s a voluntary and personal matter rather than society driven.
Even if the people are generous, they lack the necessary awareness of what needs to be done to support the cause.
For example I advise people who want to give presents to our students that instead of 100 cheap toys give me one1 iPad for the center.
I can teach the child in the school and in the house in an integrated way so he/she can take the iPad and bring it back.
However still parts of society prefer to take a picture with a pile of cheap toys for our children which will not advance them.
My response always to say clearly, thank you but no thank you. All this pile will cost 200. If you buy two iPads instead, the benefits for our children will be great.
If they insist in not bringing the two iPads, I am obliged to decline these toys and I say thank you I don’t want your gift.
That’s impressive. It’s a great challenge. Kuwait is certainly increasing its commitment to youth and to research as you say, you’ve had the pleasure to receive Sheik Salman recently and he said, and I hope he is true to his word, that the Kuwait Center for Autism needs to be on the agenda of promotion for the ministry. What areas of research do you feel are understudied or underfunded in Kuwait? Within your peers, what areas have you felt that need to paid attention to?
Due to the youth of the society there are still many areas which still are understudied or underfunded in Kuwait.
One of the challenges is with the research itself. Many people who do research, they do it for promotion in the university.
So it’s not practical or addresses real challenges. We need more practical research, like the ways and means to make our youth work in a more productive and serious manner.
Scientific research has its own foundation. I think that was the vision, to have something scientifically, there’s a lot of money and we should host a lot of people that have the ability to do practical research.
Now if we go more into autism and your relationship to it, you just helped found the Tirana, the center for autism in Albania. So it’s not just going the extra mile, it’s going the extra country. What was different for you that drove you to be so deeply involved in this?
It was all planned. It was planned that my husband would go to the United States. It was planned that at that time was I was a working mother so it was easy for me to go there.
It was planned that my husband encouraged me to go to pursue higher education. He paid all the expenses, and he said take your time with your studies.
Before pursuing my masters in special education, my knowledge was rocks and oil, since I studied geology at Kuwait University.
I was accepted in Lesley College in Boston right away. All of this, it was not on my efforts alone, it was planned by God to make me dedicated to my daughter and autistic children.
In our religion if you make donation, you give a blessing with your money. It becomes more and it’s the same for education and information, you know you have to give others.
All my strength, success, influence, I owe to God and my daughter my family, which inspire me to give more.
Now we’re celebrating 20 years of the endowment. In 20 years, that to some wouldn’t be that much time, the Kuwait Center for Autism has received remarkable praise worldwide. So, could you summarize what are the activities that are the most important to the center or at least the ones responsible for getting such a great reception? What are the most important services and efforts that you do?
The most important thing is to spread awareness in the Arab countries. We want to make the word autism as visible as we can.
We tried to bring awareness about autism to every corner of Kuwait, including leading institutions such as the Kuwaiti universities and their staff.
There’s no excuse for anybody to say I cannot read or I am not aware. It’s there for the student; it’s there for a father or a mother or for a doctor, even for a small child, and all in Arabic.
One way now is to have these books and these workshops available to those who are active in the area of special education.
The Kuwait Center for Autism, after 20 years of delivering services to autistic children, is recognized for being able to serve other countries and advise autism organizations.
I feel proud to help countries or other organizations to be connected and move forward.
Though we are always honored to give a hand to others, we still need more people to help us and keep our momentum.
Now, we were mentioning at the beginning the efforts that are being done to include older people and we understand that when it was founded, it was the Kuwait Center for Autistic Children and then it changed to the Center for Autism. Does that change the response to this inclusion of research and inclusion of people over 20?
In the beginning our aim was to help children with autism, since my daughter was a child. As she grows in age, similar to other individuals, the challenges increase and diversify.
Since the needs of individuals or adults with autism differ from those of children, we were obliged to face new challenges.
First the research in adulthood autism is minimal, and in the case of the Arab countries it is also rare. So additional efforts and funding are needed to enhance the research in this area.
In addition, different facilities and curricula are needed to cater for the needs of autistic individuals at adulthood level.
Furthermore it obliged us to establish a new building designed to provide services to those individuals.
We are working on all these fronts; in some we are in the final stages, in others we are still muddling through.
I believe the reason is because you are a symbol that represents humanitarian work, as you were saying even before the wide recognition of the KCA. What you are doing in terms of curricula to help harmonize the relationship between people that have a different way of seeing the world and non-sufferers? What are you doing in their curriculum terms of their autonomy and independence without suffering?
Unfortunately, dealing with people with severe autism is easier than those with the mild version because the latter understand more about themselves than the severe case.
Many things you think they are simple are very hard for them. We make stories for them so that they can talk about it and tell them and give them a way of talking.
Now one of our projects to get them to integrate into society is not to have society come to them, but to take them to it.
So now we have a project with many locals and give people a chance to meet them and to know them, to see that they are normal like them; they just need you to talk to them and get their trust.
This is a project. Hopefully this summer we’ll work in two banks. We already have people who work there – one in delivery and one in a cafeteria.
We’re paying another one to work for next year. Also as temp help, they can say it proudly, they don’t believe in it.
So you always have to work with the parents, saying to them, you even have to appreciate the smile of the child because it takes a lot to smile, to be there smiling with you.
Some parents, they just want them to talk. They want them to go to normal school.
My last question is actually on that subject. When you talk to parents that are currently dealing with a son or daughter with a neurodevelopmental disorder, not to only with autism, what would you tell them to motivate them to participate in raising awareness and increasing the work, in basically doing at least a little part of what you did?
I make opportunities for them, but I cannot talk much to them. Whoever wants to do this, they know they can.
We even help families by organizing workshops for nannies or drivers in English because most people bring their kids with nannies and they don’t understand them.
So we made this workshop especially for them. I’ve never heard about this in the rest of the world, that you make a workshop for the nannies or the drivers in their language.
Five showed up, out of 125 kids. You should have at least 100. We got five. We call them.
Why do you keep saying they have a problem with the driver? Let him come and let him understand about autism.