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 ABILITYs
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 its something
that hadnt 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 persons social communication; they would say
the child didnt interact with a lot of people. The difficulty
that I am facing now in my centerand that others are facing
in a lot of centersis that people still dont 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, Im 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, doesnt look you into the
This is what autism looks like. It needs to be diagnosed.
I have tried to sort out things and said: Why dont we use the
term autistic, instead of putting all disabilities under
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 blinda
more recognized disabilityyou might get more help.
Cooper: We have the same problem in the States. Most parents cant
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 elseand here comes a child with
autism. How much do you think his care is going to cost? Then if the
government says, Your kid doesnt have a disability,
that makes it worse. People who are blind, who are deaf or who cant
walk have laws to protect them. Its only right to protect those
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.
Lets 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: Thats how it is in the States, too: We have state
law and federal law. Federal law typically is higher than state law,
but theres 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. Its an independent
government on its own. It regulates and licenses companies under its
jurisdiction. You also have the Media City and the Knowledge Village,
Cooper: I didnt 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 dont complicate matters. Why? Because its 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 Authorityone department, one government
entity. We have Silicon Oasis, one government entity. We have Enterprise
Free Zone, thats an entity. We have Jumeirah Lakes Towers, thats
an entity. Therere around seven to eight in Dubai. The problem
that I see is that if you say you want to open an autism center, its
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. Itll be
better than having everything scattered around. That will be a big
topic at our upcoming ABILITIESme conference in Abu Dhabi this coming
Cooper: So the regulatory board would be administered at the federal
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 lawto the federal leveldiscuss 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. Theyll
say, No, he does not have a disability. He can walk. He can
do a lot of things. But they dont 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 cant 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 familys 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 autismwhich
is very expensive to treatsome 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 dont
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. Thats how I see it.
Cooper: Theres 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 cant wait for people to
ask if they have the coursework. You have to offer it and interest
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 bachelors 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,
lets 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 watchits a learning environment. Every day
after school, if theres a problem with one of the students,
they sit down and say, Paul wasnt 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.
Its a wonderful, evidence-based program, and its 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 Aspergers. As you know, they are
so quick to label someone. People get scared when news that like that
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 theres a classroom with an autistic child, Im 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, dyslexiaI
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, hes
always failing, hes not being good in class, he doesnt
look at the board, hes always naughty, hes a mischievous
child, he doesnt pass his class. Why do we always have
to blame the child? Maybe theres more to it. Why dont
we diagnose the child and see if he or she is dyslexic?
Cooper: Or has ADHD?
Bin Al Shaikh: Yes. Its not that difficult, but people dont
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 hes naughty and not studying?
Maybe the child is too scared to say, I cant 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, ADHDanything.
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
doesnt happen the next day. Its not easy anywhere in the
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 dont 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 shouldnt be under a lot of different entities. This is what
we are working on. The government is very open to having something
Cooper: Thats good to hear.
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Charles Limb, MD Jazzology & Your Brain
CSUN This is Your Future
Amy Brenneman Chiming In
HE Fahed Bin Al Shaikh Autism
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Allergies on Ice
in the Amy Brenneman Issue; Geri Jewell Spring Into Action;
Ashley Fiolek Making the Move; Humor A Tail of Two Kitties:
CSUN This is Your Future: Long Haul Paul Riding the
MS Trail: Tony Spineto You Say Club Foot, I Say Marathon: DRLC
Federal Wellness Programs: Kendall Hollinger Allergies
on Ice: Charles Limb, MD Jazzology & Your Brain: China
A Familys Story of Strength: Scotty Enyart PhD
the Hard Way: Amy Brenneman Chiming In: HE Fahed Bin Al Shaikh
Autism in the UAE: Caroline McGraw Finding the Gifts
in Everyonet; ABILITY's Crossword Puzzle; Events and Conferences...