Saudi Arabia is not yet widely known for attending to those with special needs. Therefore, it was a pleasure to see this article in the 18 July edition of the Saudi Gazette on Autism. According to the article, autism is a brain development disorder that begins at birth or within the first three years of a child’s life, and typically involves delays and impairment in basic social skills, language skills, and behavior. The illness currently has no cure although less severe cases may be diagnosed as a Pervasive Developmental Disorder (PDD) or the neuro–biological disorder: Asperger’s syndrome – both of which are less severe versions of autism.
Two physicians who specialize in autism in the Kingdom are respectfully, Dr. Faiza Ghazanfar and Dr. Syed Naqvi. Both of them are registered with the American organization, Defeat Autism Now (DAN) as advisors. Dr. Naqvi is a consultant at the King Faisal Specialist Hospital in Jeddah.
According to a 2007 research paper, autism affects six out of every 1000 individuals in the Kingdom. Four times as many males in Saudi Arabia are diagnosed with autism as compared to females.
Five separate ministries presented reports to King Abdullah which identify approximately 100,000 registered cases of children with autism in Saudi Arabia. A separate Ministry of Social Affairs study was conducted in conjunction with the Saudi Autism Society in 22 major cities. The goal of the study is to provide support to the families of autistic children as well as any social and medical assistance required. Unfortunately due to limited resources, only Saudi children are eligible for any assistance or financial aid.
While many differing factors may cause autism, the primary cause is genetic. There are 20 to 22 genes involved in the cause of autism. The environment in which one is in can also be a contributing factor to autism. Environmental factors include toxic elements in the atmosphere, such as pesticides, chemicals and fertilizers used to grow food. Lifestyles are also to blame. The lack of proper exercise, and pregnant women not eating healthy during term can impact on whether a child is born with autism or not. Ingesting junk food means that mothers–to–be are dumping a lot of chemical load on the unborn child, triggering autism. Another major factor is the overuse of medicine and antibiotics, which “knocks out” a child’s immune system at the onset, and according to the latest studies done on the disorder, autism is mainly an immune system problem.
The good news is that as the Saudi Gazette article illustrates, autism is starting to gain more recognition and therefore treatment opportunities in Saudi Arabia.
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As you might know Manal and I have two children with Autism. Our four year old Sinan and our almost 17 year old daughter.
I dont know where they come up with the idea that autism can be caused by overuse of anti biotics in the mother. That doesnt make sense especially when you consider some children with autism dont actually get the conditiion until they are 2-3 years old, being typically developing until that point.
I have also never heard of the “junk food” or lack of maternal excercise hypothesis of Autism. All of this seems to harken back to the long discredited practice of blaming “uncaring mothers” for Autistic children which was a common explaination years ago.
We have been to many experts in dealing with Sinan, therapists, speech therapists, pediatric neuroscience experts and never heard anything like this from anyone and these are people at the top of their fields.
This could come from the “DAN” (Defeat Autism Now)doctors maybe. These doctors often have six month of more waiting list to see them and charge OUTRAGEOUS fees. They are kind of on the outside of mainstream medical practice for children with Autism.
Anyway, 100,000 Saudi children with Autism is a rather high number considering the relatively small population of the country.
From what I have seen and heard much of the treatment of Autism in Saudi is based on dated therapy models, not on new and growing models like ABA, speech prompt, Skinners Verbal Analysis, ect.
I worry, seeing these DAN doctors featured here, that like so many things in the Middle East, Autism is going to become some sort of conspiracy theory and attract all sorts of whackos looking to make a buck.
Parents of children with Autism will spend every penny they have, and a lot of pennies they dont, to try and get their children better. In Saudi I am sure there are A LOT of people that would readily part with large amounts of cash and obviously many people willing to relieve them of it.
Instead of looking at DAN doctors and their organisation I suggest looking at more mainstream organisations like the Children National Medical Center here in DC, the Kennedy Krieger Center and other reputable groups that dont want to seem to charge large amounts of money for things that have minimal science backing them.
I want to add my voice to Abu Sinan’s. I have never heard of the antibiotice hypothesis either, nor the junk food theory. As the mother of a young man with autism, I keep abreast of most of the relevant research. Most of the recent stuff focuses on the genetic basis for autism. It is sound science. The DAN doctors are considered to be somewhat of an alternative approach. Desperate parents will do almost anything in an effort to help their child.
I recently seen Jenny Macarthy on Oprah and she claims her autistic child improved by leaps and bounds once she stopped feeding him junk food and processed foods etc…along with other things of course. I believe from her talk that she feels chemicals and additives that are in food these days has a lot to do with the rising occurence of autism in children.
Outside from the medical view, there is a huge problem that Saudi society tailors how an individual should look and function to the degree that it suppresses diagnosis of autism or even psychological symptoms.
Going to psychiatric therapy would mark someone as insane, which leaves people who suffer from disorders that could develop into worse conditions go unnoticed.
You could see a guy who would look like he is functioning normally within the society when the restrictions where he functions under puts boundaries to his actions in this enviornment… but at a more relaxed environment, like his home, he can be a completely different person.
@Coolred,
Jenny Macarthy is a bit of a nut case. She is still on the bandwagon that thinks vaccines cause autism even though there is ZERO evidence to support this.
What is more, the ingridient Jenny claims caused autism in vaccines isnt regularly used anymore, but autism rates climb. Our son didnt get any vaccine with this ingridient, yet he got it.
The vast majority of medical research shows there is a genetic link to Autism, that is why when you have one child with Autism your chances of having another go up greatly. It is felt there is a genetic factor, as well as some environmental triggers.
As Autism is a spectrum disorder it is possible that there are many causes for it.
The best reason for the state of Jenny’s son is her large amount of money. The therapies that Autistic children need are VERY expensive and only the very well off can give their children what they need. Jenny and her boyfriend have almost unlimited resources.
THAT is the real reason her son is doing as well as he is, that and luck that he didnt come severe.
Those of us without the money dont have the resources she has and cannot get our children the therapies they need. Meanwhile she has used Autism to push her own fame and make more money.
He theory holds no scientific evidence and doesnt even make much sense. We noticed that our son had autism long before he was eating processed and junk food.
coolred – Avoiding junk and processed food causes the health of even non-autistic kids to increase by leaps and bounds. 🙂
Ok ok …I been schooled. 🙁
I know next to nothing about autism as thankfully my children have not had to deal with this…so I will not comment further.
Radha…agreed.
I am always glad to read Bedu’s posts about Saudi financial and intellectual capital being used to increase the well-being of Saudis and non-Saudis too. But as little as I know about autism, I was quite surprised to read these blanket assertions about environmental factors. I certainly support people eating a healthy diet with minimal processed foods and exposure to agricultural and other chemicals, and I expect over the years we’ll see more and more hard science about the negative effects of these things, but it’s my understanding that the state of autism research primarily points to genetic factors and behavioral treatments. I really feel for parents of autistic children who are encouraged to grasp at what so far seem so be straws. May Allah reward the caregivers of all children with difficulties, and may He ease the paths of these children and their families. And may we all become more accepting of people who have these challenges, amin.
I myself have also never been exposed (to my knowledge) with anyone whose been diagnosed with autism so I know very little about it. However I am pleased that Saudi media came out with a feature on autism rather than burying it under the sand.
Carol,
I understand what you are saying, at the same time “no news” is almost better than the wrong news. These people, no matter how on the fringe they are, need to realise the damage that blaming the parents for the conditions of their children can do.
For decades “experts” thought that Autism was caused by uncaring and unsympathetic mothers. I can only imagine the pain and hurt this cause thousands of mothers who watched their Autistic children’s issues and through the ignorance of “experts” thought they were to blame.
These “DAN” doctors are just the same and they make A LOT of money in the process! It’s amazing the money parents will pay to try and make their children better, especially if they are told their diet and lack of exercised caused their children’s issues.
If Autism has these numbers in Saudi one would think they would launch a few multi-billion dollar programs to address it all over the Kingdom. I hope they do in the future, and I hope they are programs based on scientifically tested and proven methods, not quacky ideas from quack folks looking to make money off the pain and suffering of parents.
I read about a study being done on bedu/tribal Saudis in northern Saudi who have a high rate of Autism. As these folks do not have the access to bad foods that those of us here in the West do, it is clear that these things have nothing to do with Autism, rather the clear link is genetic maybe sometimes mixed with a environmental trigger which certainly is NOT a bag a doritos and a soda.
@Carol,
Thank you for shedding some light on this issue. I hope there are more than just these 2 doctors in the Kingdom who specialize in Autism. Especially, due to the HUGE number of cases there are in Saudi.
@Haya,
Thank you VERY much for your kind words and prayers. It really does mean A LOT! 🙂
I believe, as well as Abu Sinan, that the hardest part in dealing with Autism is the NOT knowing the cause. It is still up in the air, no one knows, more research is being done and yet nothing!
We believe that this is extremely frustrating and I think a part of many parents out there with children with Autism are simply hoping and praying for a little pill that would take it away.
Unfortunately, it does not work that way. We are always keeping our fingers crossed and hoping, just like many parents out there, that sooner than later, the “cause” will be found. If the “cause” is found, then it is much easier to start working on the treatment.
Right now, you have SOOOOOOO many treatments out there from the knowledgeable and the not so knowledgeable. Everyone is trying to prove their method is right and vice versa. And for some, while doing so, there is a HUGE profit to be made.
I believe with the “cause” finally known, ALL will be working on the same wave length which is to help those children with Autism to function in every day life and live their lives with success!
I can’t imagine the pain that parents suffer while trying to help their autistic children. I did read a year or so ago that it was a wide-spectrum disease, and some parents claimed that by limiting certain foods…especially whey based food, that their children were more alert….sometimes in fact, the autism seemed to disappear altogether.
I asked my friend, who is a special needs instructor here at one of the colleges, and she told me the same thing….it works for some in that certain spectrum.
While working with the handicapped at a horse ranch here in KSA a few years ago, I came across an autistic boy one day who was 16 or 17 at the time. I was told that he couldn’t ‘kick’ the horse and ride alone because he could only imitate the person training him, so he could only kick one foot or the other on the side of the horse at a time whenever she told him to ‘kick’. (His trainer was explaining how it all worked…and how they imitate you.) Well, not to brag, but as a former KG teacher and administrator, I found this particular problem with him riding to be very simple to correct….and this was my first time meeting any autistic child.
I asked one of the groomsmen there to stand on the other side of the horse. I told the groomsman that when I said the word, ‘KICK’ to the boy, that he should slap the boys foot against the horse at the same time I did. So, we worked together and the problem was resolved in less than 1 minute! The boy got the idea right away. That was one of the most rewarding times I had ever had working with the children at the ranch. This boy, while working with his regular trainer, can now ride the horse alone during class and take the saddle off of the horse when he’s finished riding. The whole process was very exciting to watch.
@Manal, Abu Sinan: I immediately thought of the two of you when I read the original article in the Saudi Gazette.
@Miriam Mac – very interesting and thanks for sharing your experience. By the way, I didn’t know that you rode!
@Marian Mac,
I am glad that you took the time to work with kids with special needs. Children with Autism often respond very well to animals. I have ridden for years and have looked into volunteering with local stables who specialise in working with children like this.
When I lived in England I used to volunteer at my stables and would show up on the weekends. I didnt work with the children, but I would come and tack up the horses and take care of things on that end so the professional instructors could dedicate their time to the kids. This was before I was married and had a little with special needs myself.
Some kids with Autism respond to glutin free diets, others to dairy free diets, some require both. This tends to work with some Autistic children who have pretty severe digestive issues. These diets are often VERY hard on Autistic children because they tend to be really picky eaters anyways.
We have a couple such stables here and since Sinan has now turned 4, the minimum age to ride at these stables, I am going to look into it further.
@Miriam Mac,
That is AWESOME that you took the time to help this boy! Sometimes, the assumption is that kids with Autism are dumb. The reality is that many kids with Autism are EXTREMELY intelligent. Some are even considered Savants.
The difference is that where a typical child will learn perhaps from the first time being told something, an Autistic child might take a million times before eventually he/she gets it.
Our son, Sinan, still does not talk at age 4, yet, we were able to potty train him. It took a LONG time but he finally mastered it! And keep in mind that even some typical children take a LONG time to master potty training! Maybe a half a million times not a million before getting it finally.
The point is that children with Autism can learn and do succeed. It just might take them a bit longer to do so than the average child out there.
And btw, Sinan as I have mentioned does not talk but Alhamdulillah, he is starting to say a few words here and there. So, it does look promising!
Please keep us in your prayers and the many families out there facing these challenges on a daily basis!
Thank you! 🙂
@Carol I can ride in a western style saddle through a trail where the horse has been trained to behave, but I really don’t ride that well as the times I’ve ridden have been few and far apart. I did try the English saddles here and felt that I was riding bareback! wink wink
BTW, when you work with handicapped children, you walk along with the horse and the rider…you don’t actually do the riding yourself.
@Manal, Are you in Jeddah? The group that I used to work with is called Open Skies. The lady that runs the place is a bit cranky at times (aren’t we all? lol) but she is fantastic with children. Many times these children we’d work with would speak for the very first time, or say their first words while riding on the horse. But they are special needs children and not all of them are autistic. One child actually got strong enough to sit up, as she was unable to do that before then.
It’s a fantastic program and the lady in charge just won a medal from the Queen of England for her work here.
@Abu Sinan Many of the people that work with the children are just other parents and students who volunteer…or the ladies from the Brittish Wives or other American ladies. You don’t have to be a professional to help out. And not everyone works with the children. Some people do other things like you do to keep the place running. All volunteered work is appreciated, believe me. BTW, Do you have a child with special needs?
Manal, that’s great to hear that Sinan is starting to say some words. What a joy! Insha’Allah, he will just continue to improve and improve. Ameen.
Manal, BTW, I’m so happy too that Sinan is beginning to say things. Like you said, it just might take more time and a bit longer to learn but many children surprise even their parents. Good to hear that he is also potty trained. That makes such a difference as well. I’m sure it must be very challenging for you. God bless you and your family for your patience with him.
I’m sure if you keep gently raising the bar, he will keep reaching for the stars.
@Miriam Mac,
Thank you for your kind words. I live in the US and Abu Sinan is my hubby! 🙂 Therefore, yes, we do have a child and a teenager with special needs. 🙂
@Sabiwabi,
Thanks for your prayers! 🙂
[…] Autism and Saudi Arabia « American BeduFiled under: America, Charity, Health, Saudi Arabia, Saudi Living, Saudi culture, Saudi customs, Saudi education, culture, gender | Tagged: America, culture, culture shock, customs, Jeddah, KSA, Saudi, Saudi Arabia, Saudi culture, … […]
Does anyone know of a good occupational therapist in Jeddah to deal with autistic children?
[…] in the creation of the Ghadah Madinah Autism Center. In a country like Saudi Arabia where autism is not as widely known for having specialized facilities to help children who have been diagnosed […]
Dear parents,
as special needs and autism professional I would like to share my 20 years of experince with those special children.
I would like to request the specialists in Saudi to come togther and work as a team in order to beat this disorder.
I’m a Saudi female living out of saudi due to the lack of the support I found. I have been serving and going around the world trying to gain the knowledge.
I’m willing to provide my support to the families in their special journey.
Asya
M.SP.ED, Communication, Behavior and Autism consultant
Hello,
My name is Yolla.I’m a behavioral therapist.I have 5 years experience in working with children with autism and other special needs will be in KSA by september 2011..
for whom it may conerns contact me at:
[email protected]
http://www.healing-arts.org/children/antibiotics.htm
http://www.autismtreatmenttrust.org/?p=1898
It seems they have found the treatments but the Dan are still great to help fighting this bacteria as they were already cleaning the guts the most they could.
Just moved to Saudia City, Jeddah and am looking for an occupational therapist in Jeddah, for my son who is 5 yrs old and is diagnosed with Sensory Processing Disorder. Please contact me at [email protected]