As the United Arab Emirates (UAE) gear up for a big 2013 conference on disability, His Excellency Fahed Bin Al Shaikh of Dubai works to raise awareness about autism in his part of the world. He and ABILITY’s Chet Cooper recently spoke via Skype.
Chet Cooper: How did you start working within the autism community?
HE Fahed Bin Al Shaikh: I watched advertisements about autism, and then I called friends to ask them about it because it’s something that hadn’t really been explored in my country. Some people wondered whether autism was a disorder, a disease or a sickness. They tended to think of it as a disease because, growing up, we thought of disability in terms of someone being deaf or not being able to walk, or that a disability was something that occurred after someone was in an accident.
Before the term “autism” was used, people would mention something about a person’s social communication; they would say the child didn’t interact with a lot of people. The difficulty that I am facing now in my center—and that others are facing in a lot of centers—is that people still don’t perceive autism as a disability, but in fact the disability laws should be protecting those who have it, too. Lacking the ability to engage socially can be a disability.
Now, I’m trying, with the help of ABILITIESme in Dubai, to speak with the government about this matter. We need to include autism in our laws. Some might just say, “Well, the person is mentally ill, closed off, doesn’t look you into the eye…” This is what autism looks like. It needs to be diagnosed. I have tried to sort out things and said: Why don’t we use the term “autistic,” instead of putting all disabilities under one umbrella?
Cooper: What would the benefit be of writing that into the law?
Bin Al Shaikh: The benefit would be that the law would specifically cover the child or adult with autism.
Cooper: So there is a need to better define the condition?
Bin Al Shaikh: Yes, because if you have a child with autism, you may not get support for that child, whereas if he were deaf or blind—a more recognized disability—you might get more help.
Cooper: We have the same problem in the States. Most parents can’t afford the $10,000 to $15,000 a year, or whatever the exact cost is, for the different services that are needed. I think many people around the world struggle with that.
Bin Al Shaikh: If someone earns, for example, a $5,000 per month salary and then you have house payments, utilities, transportation, schools, clothing, food and everything else—and here comes a child with autism. How much do you think his care is going to cost? Then if the government says, “Your kid doesn’t have a disability,” that makes it worse. People who are blind, who are deaf or who can’t walk have laws to protect them. It’s only right to protect those with autism.
Cooper: How does the government pay for those services through your system? Is there universal healthcare?
Bin Al Shaikh: We have eight autism centers in the United Arab Emirates that I know about. Disability is not covered by the federal government. Let’s take Dubai, for example. It has its own police, but there is also the federal police. It has its own schools, but they are under federal law. In every Emirate, there is one Ministry of Social Affairs, but the Emirates all belong to one federal department.
Cooper: That’s how it is in the States, too: We have state law and federal law. Federal law typically is higher than state law, but there’s often fighting between the two. Some states are more aggressive than others.
Bin Al Shaikh: We also have regulation challenges. For example, we have something called the Silicon Oasis. It’s an independent government on its own. It regulates and licenses companies under its jurisdiction. You also have the Media City and the Knowledge Village, for instance.
Cooper: I didn’t know about those.
Bin Al Shaikh: If you want to come and start a magazine in Dubai, you can either go to the Economic Department, where you would pay the fees and get your license, or you can go to the Media City and get licensed. The difference between them is if you go to the Economic Department they will tell you you need to go to the federal department to start a magazine. They need to see what subjects you intend to cover and the actual kinds of stories that will go into the magazine. But if you go to Media City, they can easily issue you a trading license. They don’t complicate matters. Why? Because it’s a small state. We have federal law, then we have state laws, and there are another three or four or five states that are being subsidized.
Now, we have Healthcare Authority—one department, one government entity. We have Silicon Oasis, one government entity. We have Enterprise Free Zone, that’s an entity. We have Jumeirah Lakes Towers, that’s an entity. There’re around seven to eight in Dubai. The problem that I see is that if you say you want to open an autism center, it’s very easy to do so. They will give you the certificate, and you can easily bring in people and start working. What I am trying to do with the new venture, called ABILITIESme, is to expand the definition of our disability law and to talk with the government about creating a regulatory board. The board would only issue licenses to autism centers that are working together, under one umbrella and under the same regulatory board that would certify therapists. It’ll be better than having everything scattered around. That will be a big topic at our upcoming ABILITIESme conference in Abu Dhabi this coming December.
Cooper: So the regulatory board would be administered at the federal level?
Bin Al Shaikh: Yes, because if you are trying to implement a law, you cannot do it from the bottom up. You need to go to the upper division of the law—to the federal level—discuss it and say, “X, Y, Z is going on. The government should do X, Y, Z for their people. The people should know the rights for their autistic children.” Over here, when you have a child with autism, you are lost. They’ll say, “No, he does not have a disability. He can walk. He can do a lot of things.” But they don’t understand that autism is something else.
There are a lot of people in the world with autism who have been treated and who have reached their individual potential. There is hope. There is only an issue if you have a child with an autism diagnosis and you walk away saying, “I can’t do anything. The government needs to do this for me.” This is wrong. If you stand up and you face the issue, you can get the support. The support is there, but it has to be sought out.
Cooper: When the government does step in and support children with disabilities, do they pay whatever is needed up to 100 percent? Is it a sliding scale according to the family’s income?
Bin Al Shaikh: The Community Developing Authority in Dubai has an annual budget. If you are a UAE national living in the UAE, and suddenly you have financial issues and are unable to pay rent, you would bring in your documents and explain what financial problems you are having. They would verify that you have an issue and say, “Okay, we are going to support you by paying for your housing accommodation.”
If you have a child with a disability, for example, with hospital or school expenses and with more expenses coming, the government of Dubai would step in and say, “Okay, how much does schooling cost?” They would pay it for you. When you have a child with autism—which is very expensive to treat—some small state governments, like Dubai, would pay X amount and then advise you to take the autistic person to their center. But there are a lack of therapists and a lack of qualified people in the UAE. If the university would train occupational therapists, speech therapists and behavior therapists over the next 10 to 15 years, we would have more experts on board rather than appointing people from outside the country.
It would be good if we had people graduating from the UAE with special therapist qualifications. Everybody would love that. But we don’t see a lot of people inside the universities asking for these courses. If nobody takes the classes, nobody will teach them and nobody will graduate or be qualified to offer these services. There is a lack of awareness in that area, too. That’s how I see it.
Cooper: There’s a saying from a popular movie: “If you build it, they will come.” So if some of the universities there build a training center around disability, or autism specifically, I think the students would come. You can’t wait for people to ask if they have the coursework. You have to offer it and interest will grow.
Bin Al Shaikh: Emirates University is launching a new speech therapy department. I think it takes a student four to six years to graduate with a bachelor’s degree. With this new program, maybe interest will grow in that subject. But if we do approach the government and say, “We have a lack of occupational therapists and a lack of speech therapists,” perhaps they can implement this coursework into the universities. They could look at it and say, “Okay, let’s have a degree to certify speech therapists, behavior therapists, occupational therapists, psychologists and clinical psychologists.” We have to start somewhere.
Cooper: When we last spoke, I mentioned that I was on the campus of California State University, Northridge. They support a school called CHIME, where a small but significant percentage of the kids have disabilities and autism is definitely part of that integration.
Bin Al Shaikh: I was reading an article about that.
Cooper: The university has a lab with two-way mirrors in the classroom, so as the kids and student teachers interact, the parents and other faculty can watch—it’s a learning environment. Every day after school, if there’s a problem with one of the students, they sit down and say, “Paul wasn’t really reacting today. What can we do differently?” They continually review the curriculum, pay attention to how the children are behaving and explore how they can get the results.
It’s a wonderful, evidence-based program, and it’s creating real-time research on enhancing the lives of kids with different disabilities. Kids with autism often present the most difficult behavioral issues, like you said, and the research is still relatively new. The number of new cases is staggering.
Bin Al Shaikh: When I listened to the news of the school shootings in the US a few months ago, they said of the gunman, “Oh, he was autistic; he had Asperger’s.” As you know, they are so quick to label someone. People get scared when news that like that comes out.
Cooper: When there is a mass shooting people often assign mental health issues to the suspect, which is a challenge for those dealing with advocacy in those areas. It puts the fear in you that anybody labeled as having bipolar or schizophrenia or some other mental illness is on the brink of snapping.
Bin Al Shaikh: When the parents in my country heard that a kid with autism was involved in that mass shooting, some said, “Oh, no, if there’s a classroom with an autistic child, I’m not going to let my child go there.” There is no awareness about it. A child with autism should have exactly the same rights as a typical child. He has the right to be taught. He has the right to be treated. He has the right to everything any other child has.
Cooper: What is happening around Attention Deficit Hyperactivity Disorder (ADHD) or dyslexia?
Bin Al Shaikh: These are important issues, as well. ADHD, dyslexia—I know that there are a lot of dyslexic people in my country, but again, you need to be able to get a proper diagnosis. Sometimes at schools, they will say, “The child is not listening properly, he’s always failing, he’s not being good in class, he doesn’t look at the board, he’s always naughty, he’s a mischievous child, he doesn’t pass his class.” Why do we always have to blame the child? Maybe there’s more to it. Why don’t we diagnose the child and see if he or she is dyslexic?
Cooper: Or has ADHD?
Bin Al Shaikh: Yes. It’s not that difficult, but people don’t always know about it. How can we come up with something to raise awareness and get people treatment? It needs to start from somewhere. If your son fails in class, does it mean he’s naughty and not studying? Maybe the child is too scared to say, “I can’t see properly. I have an issue with my eyes.” I suggest that each school, when they think that the child is not performing well, have the kid diagnosed for dyslexia, dyscalculia, ADHD—anything.
Cooper: Your country signed and ratified the Convention on the Rights of Persons with Disabilities.
Bin Al Shaikh: Yes, but it takes a long time to implement laws. It doesn’t happen the next day. It’s not easy anywhere in the world.
Cooper: When was the law written?
Bin Al Shaikh: Some laws were done in 1971, implemented in ’82, amended in ’92 and then amended again in 2002. Additional laws were over the last decade.
Cooper: So you need an amendment to include autism.
Bin Al Shaikh: Yes. If we don’t come to the government and tell them, “We have an issue. We are facing a lot of difficulties,” how would they know to expand the law? What do we really require? We need a regulatory board that licenses autism centers from one department. It shouldn’t be under a lot of different entities. This is what we are working on. The government is very open to having something like that.
Cooper: That’s good to hear.
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