Autism
is something that not all of us know about; most of us don’t know how much
autistic children suffer. When I heard about autism I wanted to know more about
it and how it is covered in Egypt so I searched on online articles, websites
and TV shows I noticed that; Autism is nonexistent for many Egyptians. In Arab
world, the field of child psychiatry is relatively new. Until the late 90’s
autism wasn’t the subject of interest in the Arab world; Due to lack of
awareness and culture besides lack of resources contribute to the unmet needs
of autistic people in the Arab world; terrific effort is needed to raise
awareness of policy makers towards the need for implementation of services and
research plans aiming to bridge the gap between needs and services. The fact of
lack of awareness towards autism in the Middle East is starting to change. This
is because of the number of researches made and the non-profit organizations
that were established; these provide services and training for autistic
children and their parents. Autistic children in Egypt face many obstacles for
example: the misdiagnosis due to the lack of awareness, lack of specialized
teachers and trainers, can’t easily find acceptance into schools, parents face financial
problems due to the high costs needed from the parents to take care of their
autistic children, lack of information provided on such an issue in both medical
schools and internet, and finally the lack of support from the government.
Media should play an important role in such an issue to raise awareness about
autism and to help these kids to live a better life and have their rights in
our society.
The
only non-profit organization that is trying to raise the awareness in the
Egyptian society towards Autism is “ The Egyptian Autistic Society”, and
they’re trying to give full explanation on what Autism is.
Dalia
Soliman the founder of “Egyptian Autistic Society” when she was studying abroad
and returned back to Egypt she was shocked to find out that there was nothing
established for children with autism. She started in establishing the Egyptian
Autistic Society in 1999; at that time most centers just focused on special
needs in general and didn’t have services that are specialized for autistic
children. She offered training in autism for pediatricians, nurses,
schoolteachers, and primary health care providers.
She
also decided to plan several events in April to raise awareness for autistic
children and raise people’s awareness and understanding of the disease. And
even till now EAS is still the only non-profit organization that focuses on the
suitable treatment and awareness of autism. It’s a place for parents to turn to
for guidance and information about potential treatment approaches; this depends
on the level that the autistic child is at.
Obstacles
autistic children face in Egypt due to the lack of awareness.
First,
misdiagnosis, the lack of awareness in the Egyptian society was the main reason
for parents with autistic children to struggle just to get diagnose for their
children and this is due to the lack of awareness.
“We
have a very serious problem of under-diagnosis in Egypt and the Arab world.
Many pediatricians fail to understand the signs of autism so the children never
get the proper care and treatment they need” as Dalia Soliman explain. “Online website”
Dalia
Soliman also said that when she started 14 years ago, 80 percent of the cases
were misdiagnosed. Many parents were told that their kids were suffering from
cerebral palsy, but when EAS launched their campaign they diagnosed 1000 new
cases.
The
cause of autism isn’t determined yet and this is due to the lack of awareness
about it. But increasing awareness about autism this may help in early
treatment.
“It
is difficult because even for us, doctors, we have very little information on
autism” as Dr Sherif Atallah a psychiatrist who attended the event of the first
awareness campaign that was launched in Egypt. “Egypt Today”
While
it’s so difficult for autistic children to get the right diagnose in Cairo the
situation in governorates is more sorrowful; outside Cairo is impossible not
just tough. If people where lucky to get a diagnosis, they may be forced to
move to Cairo or sometimes other people visit EAS, once a month or every few
months. Dalia Soliman pointed out that this is difficult and we need to have
services available in all governorates.
Second
obstacle, is the lack of specialized trainers and teachers.
Dalia
Soliman clarifies “ The associations concerned with autism suffer from shortage
of trainers”
Maha
Emad EL-Din who was representing the ministry of health at World Autism
Awareness Day said that they need centers to train people to be able to
properly educate or deal with those with autism.
According
to the specialists “One in every 250 children in Egypt is born with autism.”
However, there is only one center that trains autistic children. This was
announced during the annual campaign of raising awareness about autism that was
held in April. “9
April 2013 “Al Jazeera online”
Third
problem autistic children face is that they can’t easily find acceptance in
schools and the financial problems due to the high costs needed from the
parents to take care of their autistic children.
For
special needs children to attend mainstream schools, they are required to
undergo an IQ test. This would be so hard for autistic children that suffer
from lack of communication to undergo this test and they will obviously fail.
Even if they were able to make it to mainstream school they will need to be
accompanied with shadow teachers, which will cost about 1000 per month, some
parents couldn’t afford all this money and if they did, not all schools accept
autistic children. Despite of the existence of law providing for integration
within schools, still autistic children aren’t accepted in private schools and
the condition is even worse in public schools.
“While
on paper many schools take autistic children, in practice very few do” as Eman
Gaber a deputy manager of the children’s department at the general secretariat
of mental health in Abbassiya mental hospital explain”
“Al
Ahram online - Yasmine Fathi 3 April 2013”
When
a survey was done in 2012 to see if parents will accept autistic children with
their children in schools or not? The result was that the majority said no.
High
costs needed from the parents to take care of their autistic children, not all
parents to take care of their autistic children not all parents can afford
especially poor families. These costs might reach 100 pounds per hour in
private schools, that means an autistic child nearly need 10 thousand pounds
per month.
For
autistic children to learn basic social, occupational, and speech skills they
need at least 4o hours of one-to-one training a week for several years.
“The
overall costs may add up to more than 5000LE per month” as Ranwa
Yehia
a former journalist, who had an autistic son, explain.
Specialized
programs started to be used; called “Head Start” and this is a full day
program. This program will help poor families who find difficulties to afford
money needed for their children and the fact that their children sometimes drop
off mainstream schools since teachers in these schools aren’t trained to handle
autistic children.
Fourth
is, the lack of information provided about autism in general on the Internet.
When Ranwa Yehia was surfing the Internet to find information about autism
because she had a son who suffered from autism she was shocked that she found
very few information in Arabic for Egyptian mothers.
According
to Ranwa Yehia “There isn’t enough awareness about autism in Egypt or other
countries in the region.”
Finally,
There is lack of support from the government towards associations that take
care of autistic children, schools, and for autistic children to have their
rights in our Egyptian society.
Ranwa
Yehia argues “Discrimination comes mostly from the government, regarding
mainstream autistic children within the educational system”.
Another
point is that autistic males in Egypt are not exempted for the army; this is
because autism isn’t recognized as a disability.
From
Ranwa Yehias’ point of view “this can only be solved by nation-wide
governmental policies to support parents facing this situation”.
Awareness
campaigns were held to raise people’s awareness towards autistic children. There
was a national day for autism awareness held under the Egyptian association for
autism. This words were announced by the TV presenter Amr EL-laithy, The main
points that was announced during the conference that between each 800 kids in
Egypt there is one born with autism. Moreover, there are only 5% of work places
for all retarded Egyptians and even those 5% they don’t take them, it’s just a
routine show.
Einstein,
Bill gates, and Tom cruise were autistic and they are geniuses just because of
their healthy and caring environment. While in Egypt autistic males in Egypt
are not exempted for the army; this is because autism isn’t recognized as a
disability, while at the same time people with flatfoot get such an excuse!
“They
need their legal rights in Egypt”.
“Egypt
has, for the first time launched its own awareness campaign, marking the
country’s first wide-scale efforts dedicated towards autism awareness.”
“Passant Rabie- Egypt Today.”
Their
slogan was “ I’m autistic give me a chance”. The campaign launched early on
April 2 from the headquarters of the EAS to Wadi Degla where the event was
held. Special guests attended to help in raising the awareness towards autism,
including, Amr El-Laithy who will help in raising awareness through his
program, Hisham Abbass as media spokesperson, and finally Hend Sabry who
participated in documentary about autism by society.
As
Dalia Soliman says, “ we faced a lot of problems such as lack of awareness on
autism, lack of funding, lack of specialized teachers and not enough
information [being taught about autism] in medical schools.”
Almost
70 years later, still the awareness on autism disorder and how it differs from
other metal diseases is very little. All the information gathered proves that
proper treatment and integration is needed and that won’t happen unless we
raise awareness about autism.
Finally,
Dalia Soliman is trying her best to get both rights and services for autistic
children.
In
Amr El-Laithy TV show, He had an interview with one of the parents with an
autistic child; she said that at the beginning her son was misdiagnosed by more
than 20 doctors as a mentally retarded or increase the level of electricity in
the brain, she also added that lack of schools is noticeable thing in these
cases but no one showed any kind of care, and that the treatments are very
expensive for a poor family to afford. Moreover, she said that they need school
to deal with autistic children in Egypt so they can learn, as they can’t be
accepted in normal schools.
