Marriages continue to be predominantly arranged in Saudi Arabia. In the majority of cases these marriages are between family members such as first or second cousins. If not, then the marriages will continue to be within families such as a son of a sister-in-law may marry the sister-in-law’s niece. I know…it can get confusing sometimes keeping the relationships straight.
On the positive side the arranged marriages between families and between relatives usually keeps the marriage together. Even if the couple are not passionate about one another they are less likely to divorce as that could disrupt and harm relations between the families. Arranged marriages between families are also viewed as one knows what to expect and familiar and comfortable with the values and views of the family – they are a known entity. And of course, wealth, properties and other assets remain within the family as do any family secrets, issues or problems. Saudi families are traditionally private and many view as “closed.”
However on the negative side because of so many families marrying consistently within families, there is a much higher risk for genetic problems and other dieases such as Down’s Syndrome, diabetes, blood diseases, etc. While the Saudi government now requires certain blood tests to be taken prior to any marriage even in spite of recommendations against marriages due to genetic incompatibilities, such marriages may continue to take place. The family’s perspective on such issues is that “it is up to Allah” on whether any children born of such a union would have any deformities or abnormalities.
It is not only Saudi Arabia where marriages are mostly arranged and within families. This happens a lot throughout the Arab States and Asia as well. However it seems that Saudi Arabia has a high proportion of children born from such unions being at higher risks to having problems. In my view this is in part due to marrying within families has been going on for generations so individuals genetic structures are weakened.
And at least for me, this link further summarizes not only the negative aspects of familial marriages but why such marriages continue to give Saudi Arabia a bad name.
Filed under: relationships, Saudi culture, Saudi customs, Saudi Living Tagged: | Family, marriage, Wedding
An interesting topic and posts. Just a couple of comments:
One of the reasons that arranged marriages succeed is that the families who arranged them work hard to keep them together, encouraging the couple to resolve differences, supporting emotionally and materially, and self-monitoring by the family of anyone who might be interfering in the couple’s happiness (except for the groom’s mother of course
–just joking but Mariam’s comment about the husband’s mother ruling him and the household at least until there are children rings true with sociological studies).
Geneticists have shown that it is the repeated intermarrying within families over generations and over time that produces the most problems. The more tribal and isolated the culture the more likely this is to happen. Otherwise the risks of congenital abnormalities in cousins marrying are only marginally higher than in unrelated partners. Many genetic disorders are spontaneous mutations, but where inherited, the risk of two affected individuals mating (in the case of recessive genes it takes both partners to be carriers) becomes higher with inbreeding.
Underage bethrothal and marriage are worrisome–mostly by stifling development and choice, let alone the risks of teen pregnancy.
A good topic
I know they did a study of certain tribes and families in the Najd. It was concering autism and high rates in the area. The thought was that the inbreeding was the cause of the issues.
Family marriages are successful, but I think you’d have to define on what levels they are succesful. Many stick together because to divorce would be to tear an entire family apart and to cause a large amount of strife. So there is great pressure to remain in these marriages even if there is abuse, even if the people involved are very unhappy.
There are times where divorce IS the best thing, not only for the adults involved, but especially for the children.
This practice, by some in Saudi, has promoted a culture where anything but tribal and family marriage is looked down upon. I would also argue it has a lot to do with keeping the wealth, connections and other material goods in the family and the larger tribal group.
I agree with your comments Abu Sinan
It’s amazing how connected a society (not just a family) can get through marriage. We Meccans of non Saudi origins are notorious for only marrying other immigrants. And in a small(ish) population like the one in Mecca it means that everyone is related to everyone else in someway. When I got engaged to the girl who is now my wife the only connection we had was that she was the daughter of my aunt’s friend. Pretty soon it was discovered (among other things) that I knew her uncle from way back and her cousin is a close friend.
Abu Sinan- I would question such a study that suggested the inbreeding (and I hate that term like we are animals not humans) was the cause for a high rate of autism in a particular family group, considering that they family group probably has some of the same dietary habits, same enviromental conditions, and have other things that are common within their group that could have an inpact on autism.
Carol- according to a study done in Saudi there was no real basis to associate a consanguineous marriage and Down Syndrome (DS). Another study that was done in India which has a higher rate of Ds than other countries found consanguineous marriages don’t have a significant influence on the increase of DS, rather the age of the maternal grandmother was a major factor.
In the family we have several first cousin marriages none of which have any children with DS even w/ increased age of child birth. Yet we have the Umar who has DS.
Speaking of health issues as a result of consanginous marriages, my mother’s half of the family at one point had a very high rate of cousin marriages. Her side has since stopped practicing familial intermarriage but there remains this strange issue of a rather large number of her family members being born completely blind in one eye, one of my siblings included. It’s really weird but that’s the only rational explanation we’ve been able to come up with. In the short run cousin marriages might seem like a good idea, but years down the road not so much
“Many stick together because to divorce would be to tear an entire family apart and to cause a large amount of strife. So there is great pressure to remain in these marriages even if there is abuse, even if the people involved are very unhappy.”
My thinking exactly. This is a really extreme example, but a former couple that my family was very good friends with were 1st cousins and also married. The husband no longer wanted to be married to his wife but due to the familial ties between him and his wife really couldn’t divorce her without tearing both families apart so he decided it would be a good idea to kill her instead. He was unsuccessful in his attempt on her life but he ended up going to jail for about 10 years and was recently released on parole. Needless to say he got the divorce he wanted so badly but could not initiate and she ended up getting remarried to someone completely unrelated to her.
My overall thoughts on cousin/family marriages…they suck
Nzingha said, “rather the age of the maternal grandmother was a major factor.”
Would the birth order of the mother count? For instance I know women who have a wide range of children. From adult children to babies. Would it be that the children of the younger set are at higher risk due to the materal grandmother’s age at the time of the birth of her child? Did I make myself clear? I understand what I am asking, but does it make sense to you?
Ummadam- from what I read on this study it was the older the age of the maternal grandmother who gave birth to the daughter the more increase of risk for DS for that daughter. And this hold true especially for younger women giving birth to children with DS
summary of the study
“Out of the 69 DS cases studied, 67 were free trisomy 21, two cases were mosaic trisomy 21 and there were none with translocation. The number of DS births was greater for the young age mothers compared with the advanced age mothers. It has also been recorded that young age mothers (18 to 29 years) born to their mothers at the age 30 years and above produced as high as 91.3% of children with DS. The logistic regression of case- control study of DS children revealed that the odds ratio of age of grandmother was significant when all the four variables were used once at a time. However, the effect of age of mother and father was smaller than the effect of age of maternal grandmother. Therefore, for every year of advancement of age of the maternal grandmother, the risk (odds) of birth of DS baby increases by 30%.”
link to read it all http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1360060
Subhanallah! I never would have considered that. My mom had 3 kids and was finish by 25. I didn’t even get started until I was almost 30.
I really like the dress.
From what i’ve read…marriage between 1st cousins increases the risk of “recessive gene” related diseases. So for example…if they (that particular family) carried the recessive gene for cystic fibrosis…it would increase the risk of their children having that disease (but the increase is only a few percentage points). I’d like to know the real numbers on the affect of this behavior over time, like the 3rd or 4th generation of inbreeding. I don’t know…does it “dumb down” the group? In any case…I think it’s pretty gross to marry your cousin, especially someone you grew up with….I’d feel like I was doing my brother. Eeeeeeeeeew!!
As far as I know genes can jump, and also you can be a carrier without getting ill yourself. But I think it’s criminal towards your children to start breeding while fully aware of what you might be doing to your children.
I think it’s really, really STUPID to say ”It’s all in the hands of God” and take the plunge.
Because, yes, it actually really is in the hands of God who created the universe, us, and genes.
And God has created us in such a way that if we continually inbreed, generation after generation, we will develop all sorts of defects and illnesses.
You could take this as a pointer: Don’t in-breed!
But nooo, Humans know better! And consider their own petty little family or economical concerns of greater importnce than the health of their bloodline, or the hint God has given us.
Nzingha,
Why would you question it? Maybe you do not know, but there is a proven genetic link to Autism, hence a sibling with Autism is statistically far more likely to have another sibling with Autism.
Given the genetic link, those families where interbreeding is an issue, have a higher incidence of Autism and other genetic malformations.
As a father of a child with Autism and a connection to Saudi Arabia, I took notice of the reports.
Since places like Saudi Arabia have a high rate of inter family marriage the rates of genetic abnormalities rise. Hence, you cannot find a better place for finding genetic issues and study them.
The genetic link is so well known with Autism that a group in the UK has actually come out with a pre-natal test for Autism. Autism support groups are worried it will lead to the types of abortions that are already seen with mothers carrying DS children.
http://www.nysun.com/health-fitness/study-weak-synapses-may-be-cause-of-autism/81752/
http://focus.hms.harvard.edu/2008/071108/genetics.shtml
I typed a post here but it seems to have disappeared, probably in the spam box because of links.
Nzingha,
If you do a google search for “Autism study Saudi Arabia” you’ll find a bunch of links about the genetic studies done in Saudi Arabia and the wider Middle East looking for genetic issues and Autism.
You might not know this, but there is a clear and proven genetic link to Autism which is why a sibling with Autism is far more likely to have a brother or a sister with the issue.
The genetic link is so strong that a pre-natal test for Autism has been developed in the UK. Advocates are worried because they fear abortions of affected children, as is the case with Down Syndrome. But think about it, many people have said Albert Einstein, Beethoven, even Thomas Jefferson had Autism.
Imagine the affect on the world if any of them had been aborted? Aborting any child because it might have issues is wrong.
Anyway, inbreeding causes a larger and more prounced picture of genetic issues, and given the clear genetic nature of Autism, there could be no better place to study genetic faults than amoungst the tribal areas of Saudi Arabia.
I to am suffering from comment erasure. Third time lucky I hope.
Genetics is a complex and everchanging field of study. Some basics relevant to this discussion.
1) the vast majority of genetic and chromosomal abnormalities are spontaneous mutations, not inherited.
oops, fourth time lucky
2) some patterns of inheritence are increased with inbreeding eg. recessive pattern of hemophilia and European Royalty from England to Russia
3) the occasional cousin marriage results in a slightly increased overall risk, whereas multigenerational intrafamilial or intraethnic inbreeding does subtantially increased risk eg. Jews and cystic fibrosis
Autism and Down Syndrome certainly fall into #1. Only a very small minority of casesof these disorders show a clear pattern of inheritance. Syndromes as opposed to diseases are by definition more poorly defined in terms of manifestation and causation. Autism moreso than Down Syndrome, although both have wide variations within the disorder. While the genetic pattern is clearer for this very small minority within the total number of cases the rest are left with uncertainty about exact risk of recurrence, and causation.
Retrospective diagnosis of famous figures is notoriously difficult and suspicious, usually reflecting the concerns of the contemporary era, and the individual diagnostician. Eg. Karen Blixen/ Isak Dinesen’s anorexia nervosa which has been such an inspiration to contemporary anorexics was in fact nothing of the sort. She suffered two accurately diagnosed and documented diseases that resulted in weight loss: first amoebic dysentery, and then at he age of 70 (rather later for an anorexic) she had surgery for an ulcer that left her with a very small stomach, and an inability to eat.
Some famous people have suffered from a variety of retrospective diagnoses–eg. Van Gogh–temporal lobe epilepsy, manic depression/bipolar, schizoaffective disorder, etc. Often one “symptom” which may in fact be normal is magnified, pathologized and ascribed to a current diagnostic categor, eg. Einstein’s speech delay.
Or the overlapping manifestations of different diseases are confused, eg. the psychological complications of Beethoven’s progressive neurological deafness.
The best place to do genetic research is obviously in families with a high incidence of the same disorder (eg. the Canadian schizophrenia family with the abnormal toes), or endogamous ethnic groups eg. the manic depressive Amish, Jewish for an number of illnesses, etc. Sometimes (?many times) an environmental cause is discovered eg. Serbians and gastric cancer–no genes just smoked meat.
Abortion is a connected but separate and complicated fraught topic. Whatever one’s position loving and caring for the ones already born is extremely important.
Okay, going to try to submit now–hoping the computer, website, search engine whatever is happy.
ps. encourage by my successful posting I dare to edit:
“I too am suffering from comment erasure”
Ah, I feel so much better now.
edit–encouraged
enough!
I was just talking about the issue of first cousin marriages today with a Bahraini and American and myself…both of us Americans are completely against the idea of first cousin marriages…its like doing your brother as someone commented…but the Bahraini was adamant that its the preferred choice for marriage partners to keep “the blood pure” as she said. I didnt understand that concept since obviously studies show that the blood doesnt stay “pure” when close relatives marry over time. Considering the fact that many Arab countries implement blood checks against disease before marriage is a strong indication of this fact.
I also agree that the purpose of marriage between families was to keep wealth and power in numbers within a familial tribe…to allow a woman to marry into another tribe was to allow not only her body to leave…thus reducing your numbers and ability to increase them through her breeding…but also her wealth etc would leave with her…so in the beginning these marriages took place with or without her consent merely to control her body and assets. I would guess that the practice hasnt changed that much over time…all though now it would seem females are a little more accepting of the idea of marrying within the family and expect such proposals.
@ aafke – I agree. The dress is fab. I was hoping the blog was about it.
)
@ aafke again ! – “taking the plunge” (no pun intended).. Bahahahaha
See, I can’t even take inbreeding seriously. It’s just so.. so.. so.. absurd. and.. ew.
..reminds me of the scene in Gone With The Wind where the O’Hara’s are driving to Twelve Oaks and the neighbor lady with the red hair was talking about inbreeding in horses being bad “spavins and heaves!” but that Ashley marrying cousin Melanie is just what the Wilkeses do..
This was.. um.. 1860? hellooo.
sorry. I’ll stop.
First, abu sinan and nzingha, I bow to your superior knowledge and passion. I can, however, tell that you are NOT saudi, as you freely discuss the problems your children have. I wish you all the luck in the world in helping your respective children grow into happy adulthood. Especially you, ya Nzingha, as it appears you remain in KSA.
My brother(half) has Down’s syndrome and had to be taken to Egypt as at that time there was no treatment in KSA. There is a famous family in KSA, both for itself and its intermarriage with alsaud that has a hugely disproportionate number of autistic children . Many of those children are sent to the USA for better care. My good friend, a lawyer, must practice in NYC so he can go home to Connecticutt each evening to be with his grown autistic brother. He would like to return home, but suitable care for his brother is not available.
Re: child marriages…my own mother was 11 when she married. 12 when she gave birth to my brother. Needless to say, I am opposed to the practice.
Finally, and Carol, you may wish to edit this…alsaud have vision problems, diabetes, heart problems and hip dysplasia rampant in the family. I read Nzingha’s post over again, because it does seem Down’s Syndrome is an issue there as well, and most alsaud mothers are quite young when they start giving birth, especially the alsaud maternal mother in laws due to the time.
LOL @ afke’s comment…how many western bride mannequins would be posed with hips swaying???
Chiara,
I think you are really wrong when it comes to Autism. If it is not genetic, explain the fact that siblings of a child with Autism are far more likely to get Autism?
I know this is where environment and other facts are used to try and explain this away, but it doesnt work, and my family is the prime example of this.
My 16 year old step daughter has Autism. She had a different father, born in different hospital, raised and lived in a different house in a different city.
My oldest boy has Autism. Given that the average incident for Autism in the US is about one in 150, less with females, the chance of having two children with Autism in one family with different fathers is huge.
Studies have shown that your chances for having an Autistic child go up if someone in your family has the condition, no matter where they lived, were raised, or what specifical environmental issues were at play.
Environmental issues are different here, so they dont come into play.
It is clear that there IS a genetic link to Autism, but it is not clear that all kids with Autism get it in this fashion.
To deny a genetic, family link to Autism is not to be well read in the current studies going on out there.
It is the same with cancer. It is well known that here are familial genetics pre-dispositions for cancer. It doesnt mean everyone who has the genetic predisposition to get, but it certainly means the rates are higher in these families.
Same with Autism.
I was holding my breath as it appeared my comment wouldn’t post… may I add one thing?
first cousin marriage is the oldest form of marriage in the world according to anthropologists. It is, in fact, how tribes form and become powerful. This was once crucial for survival.
Mariam,
The same thing applies to our family. My wife and I would love to go live and work in the Gulf. Before we had our little guy that was our long term goal.
However, when we found out he had Autism we changed that. Not only are there NOT much in the way of services in the Middle East for special needs children, the societies are SO backwards when it comes to these issues that we felt it would be entirely unfair to raise a special needs child in the Middle East if we had a choice.
Now I know everyone who has a special needs child in the Middle East does not have a choice to move to a location where the services are better and the societies are more forward thinking about these kids, but if you have the opportunity, for the sake of your children you should take it.
My wife is Saudi, we worried about who would take care of our son if something happened to us in the Middle East. There is no way, given how society is in the Middle East, that even her family would treat our son the way we do.
It is also about quality of life. Here in the West children and adults with special needs can live full and free lives. They have jobs, they go to school, they go out in the community. Almost none of that applies to the Middle East.
When I traveled there I cannot remember seeing one person with special needs. This is including spending months in places like Morocco, North Africa and the Middle East.
This is because the children and adults are usually locked up in homes to lead miserable lives because they are “possesed by jinn” or “just majnoon”. Government homes resemble prisons. They are hidden because the society feels that the parents must have done something really bad to be “punished” with a child like this.
None of this I am willing to subject my child to. Some day my wife and I are going to pass away and I want to leave my son in a society that cares for him, where he will get the attention he needs and where he has the ability to live a happy life.
None of that applies to a special needs child in the Middle East.
@ Andrea, I néver make puns!
@ Mariam, That’s it! Must be the luscious swaying hips which attracted me to the dress! No I relly love the dress
The horrible weddingdresses were always a great deterrent to me for getting married 
Abu Sinan
I understand and respect your passion and knowledge in this area. Hoever, I am well enough read in reliable studies and knowledge bases of Autism to be confident of what I posted (I wouldn’t have posted it otherwise, nor persisted through 4 attempts if I didn’t think it was important). I am required to maintain this knowledge for professional reasons, and have made an extra effort because a friend’s daughter was diagnosed as such (reliably and moderate in severity) at age 2 (now 6 1/2), and I have lived with and supported both parents through all the phases you know only too well–including her recent introduction to a normal Grade 1 class, challenging and heartbreaking. A family member who is a specialist in early primary education has been helpful to all of us in the Autism vs ADD features of Autism vs the spectrum of normal 6 year old, Grade1 behaviour.
Not to mention, or at least not to break confidentiality, the two mothers I see in psychotherapy–one who has a daughter who is moderate-severely affected; the other who imagines her daughter is affected because despite the reassurances of pediatricians expert in this area she cannot believe her daughter is normal–and that normal children love to echo, repeat, twirl, flap and play alone in non-Autistic ways. Seeing these two women one directly after the other is a challenge believe me. If it weren’t so unprofessional I would be tempted to introduce them.
I note, as you probably have, that in my “caseload” girls predominate whereas statistically boys do.
I think if you re-read my post carefully you will find that I stated that, while the majority of ASD and DS cases are not inherited, there is a small minority (in clinical epidemiological terms) which are inherited (in DS by translocation). You are probably aware that there are very sophisticated studies of neurological abnormalities in ASD which apply only to the inherited form–again leaving the parents of the uninherited majority wandering in the scientific wilderness. While there is a higher risk of autism in all families with one autistic child that risk is very ill-defined, especially in the non-inherited forms which are more likely akin to other multifactorial illnesses with no clear inherited pattern despite increased incidence in families– and more importantly for genetics in identical twins or even siblings raised apart –(most psychiatric disorders), or penetrance (expression of the gene and severity of the expression).
Since you thoughtfully shared your own family’s history, I would concur that in such a case (2 children same mother different fathers) there is a strong argument for inheritance, or multifactorial causation including inheritance, from the mother’s side. As you probably know, to establish a true pattern rather than a statistical anomaly (however unlikely) one would need a fuller multigenerational, multi-lateral (cousins etc) pedigree of the mother’s family.
I think most of your post is predicated on believing that I denied a genetic link in any form of ASD or DS, otherwise in fact we have said much the same thing about not all cases etc. I think if you re-read carefully you will find I didn’t, but just in case it wasn’t clear enough there I hope it is in this one. Or let me state it now as clearly as I can–most children with either ASD or DS have not inherited it, but a small number have.
Once again I appreciate your passion and knowledge in this area, and I wish you and your family all the best in this challenging set of circumstances.
BTW I am too traumatised by my previous 4-try 4-segment post to link.
Mariam–great comments, additional and otherwise! Some of the troubles you listed are probably a combination of biological predisposition and lifestyle.
Aafke–the dress, the humour, the swaying, oh my!
All who want to know or care– a reminder that genetic vs congenital vs familial are all different and not to be confused–at least not if you want to be accurate about biology, of what type, and environment.
Familial marriages and religion buffs–Catholicism used to deny marriage to cousins up to the 7th degree, now only 3rd (how Rudy Giuliani got his first divorce)–this of course never stopped various practitioners of the faith in their hillside towns from intrafamilial marriage or multiple interfamilial marriages eg the Francheschini’s. Bartolini’s, Giardini’s all marrying each others’ cousins, brothers, sisters etc.
Oh, and in the family with special needs category–one of my nieces died age 5 from a neurological disorder that started age 6 months and became so profound she went from normal to vegetal in 6 months. Unfortunately for family peace of mind it wasn’t Tay Sachs, which is clearly inherited and can be tested for, but rather something in the vague left over neurodegenerative category. She received excellent care and much love from family in a resource poor country.
Masha’allah her little sister is normal. 
(no Arab inbreeding involve– or a least none for the previous 3 generations)
Abu Sinan–perhaps at the time of your travels you were less sensitized to special needs children, or define that as not-so-visible special needs, since Morocco abounds with the visible effects of polio, cataracts, trauma, brachial plexis tears, etc. and my niece was never hidden. Now try to find a special needs child in Maoist China–there was a real challenge.
Most of the research to date in the area of Autism, points to at the very least, a genetic predisposition, unlike Down Syndrome, which is for the most part a spontaneous genetic mutation. The study referred to by Abu Sinan is one done by Johns Hopkins and may have been assisted by Harvard (not entirely certain of that last part). These researchers are not lacking in credibility. I make no claims to be a physician but as the mother of a young man with Autism, I keep up on the research.
From my internet research, it appears that Saudi Arabia is very much trying to address the area of Autism and the services needed for such individuals. There was a major workshop there not so long ago with researchers from around the world. So, the times they are a-changin’.
Chiara,
I go based on what I saw and based upon what my wife has said, being a Saudi, and what her family says.
There is a real issue with special needs people in the MENA (Middle East North Africa) that should not be minimised or pushed to the side.
Fact is that the societies do not deal well with these people nor do they provide for care or a real life for these people.
As a matter of fact, what drove my wife to get into working with special needs people, before she had children, was encountering a young girl chained to a column of a villa in Saudi. The girl clearly had issues, but they were dismissive to my wife who enquired about her.
She was “possesed”. That girl is now either dead, or so far gone living a life of seculision that it isnt even funny. This was not an aberation, rather it is the norm for the region.
Irish Eyes,
You are spot on. We have actually been contacted to work with a study through the National Children’s Medical Center and the Kenndey-Krieger Institute. I think we are going to agree. If anything we can do will help others, why not?
abu sinan, how did your wife get permission to marry you?
Most of my family has been or is in, familial marriages. The good news is at least 50% of them work out well, not just because of family pressure, but that the couple is like two peas in a pod (I LOVE that expression lol) and know what to expect from each other. This can be seen as a very successful stat given the divorce rate in saudia. Hmmm, come to think of it, maybe the guys just go on to marry others without divorce! just kidding…
Abu Sinan- I would question such a study because as I said that such families would share so many other things that one would be hard pressed to rule out other influences in the cases of Autism. It is a spectrum disorder, hence how one gets autism can differ and does differ. There is no one thing that causes autism as I understand it. Can there be a genetic predisposition for some?? yes but not all so what are the other triggers? And can those other triggers impact a study that suggest that marrying w/ in the family is the cause?
Im sure you can determine what my view on the prentatal testing for autsim would be
Can we all say Eugenics???
@ Mariam- Does my non saudiness really shine through??
I’m finding DS resources limited to say the least.
@irisheyes- Saudi loves workshops, discussion panels, and debates about every move. To fart or not to fart?? It gets to the point of rediculous. At one point they seemed on the move in addressing the need for children with DS but than that went the typical route. Full force and much excitement for the first two years.. than it all dies down, resources dry up and all the educated move on to other opportunities in a land that isn’t filled with government snail paced happenings and a society that is willing to work at fulfilling the needs of their children. Another major ordeal.. but don’t get me started.
Irisheyes–thank you for your distinction in your first sentence which refines but doesn’t contradict what I said, “genetic disposition” is the same as “multifactorial including familial with genetic component not yet defined”. Also, I was well aware of the research Abu Sinan linked before it was posted here, and the high credibility of the researchers involved. Again I don’t believe it contradicts what I said. I am aware enough about Saudi medicine to know that it is highly advanced and contemporary in many fields. I am glad to hear that Autism is receiving appropriate attention there.
My stance as a clinician, researcher, and bioethicist is highly patient and family centred, and I commend both you and Abu Sinan for being active, involved, up to date parents.
Abu Sinan–there is no doubt that MENA has a greater degree of stigma regarding mental illness (the possessed, the hexed, the acursed), including physical illnesses misunderstood in the same way (famously epilepsy in the past and everywhere) than Western places where stigma still exists though usually more subtly. I certainly have encountered “the crazy lady in the attic” (a literary term implying no disparagement of the person, but rather discontent with societal attitudes) in Morocco– she was hanging laundry on the rooftop terrace at the home of an extended family acquaintance. And, if you wish to see the chained up and beaten, go to the marabout specialized in the mentally possessed “Bouya Omar” near Fes, where desparate families take their loved ones for exorcism, despite or in conjunction with modern psychiatric care and facilities.
Special needs is a huge category and certainly all deserve more respect and better care whatever the diagnosis and cause. I would never “minimize nor push to the side such a need”, and hope that my posts did not lead to any misinterpretation in that direction.
Trust me from my experience with family, a diagnosis, a research interest, and an activist community are preferable to ” not sure exactly what the diagnosis is, whether future children will be affected, or what to do except palliative care, and will most likely die age 3-5.
Just so there is no further misunderstanding
Nzingha–a nice summary of the diversity of spectrum disorders, and the phenomenon of “diagnostic fascination of the year syndrome”. I am sorry to hear that DS resources remain so limited as I thought you had found some good ones. Hopefully as Umar grows the resource community will grow with him.
chiara- I found a school up to a certain age at 70,000 SR a year in Bahrain (not saudi hence for those in saudi this is out of reach for most due to place and price) I did find a good Pediatrician in Bahrain.. again not in saudi. My PT has doubled in price thanks to saad again putting good services that are there out of touch for most saudis (gets good doesn’t it??) found another hospital with a PT but no OT as even the government hospitals don’t have OT at all. There is not local association I can turn to for help, information or just someone to say “Yea been there done that you’ll get through it” Keep in mind I’m an independent resourceful self educated cheeka not dealing (or at least putting up with ) cultural hang ups about DS, I have full support of Mr. Man and the ability to squeeze blood from a turnip if necessary.. but what of the average saudi? What services are available there?? again.. limited.
I can say alhamulillah that my little Umar doesn’t require more aid, help and services than he does at this point. Because if that were the case this resourceful cheeka probably would have left saudi all together because the pickings would have been even worse.
Nzingha–my (limited) Arabic fails me– Oi vey! Which actually is appropriate since a mid-comment quick google “down syndrome resources middle east” turned up only one centre–in Israel. I have no doubt if they are there in the Gulf you will find them. Have you given any thought to creating a blog devoted solely to DS in the Middle East to share feelings, resources, ideas with other DS parents, or even form an advocacy group–if only among expats and Saudis more willing to discuss family problems even potentially anonymously? Immigrating elsewhere is sometimes the only solution–even within Canada resources and government insurance coverage vary from province to province (Quebec is one of the best , maybe Alberta with the oil wealth and all, and Ontario for DS (but not Autism) )– just in case the Gulf Countries don’ t advance as fast as Umar
.
Mariam,
My wife didn’t get permission to marry me. She lives in the USA and has permission from God first, from her family second. The Saudi government has decided that it comes before God and can decided who can and cannot marry. We decided to go with God’s laws and ignore the laws of the Saudi government. Of course that means that against Islamic law the Saudi government doesn’t accept our marriage so we cannot travel to Saudi together and she cannot get other benefits from the government.
We are in the process of trying to get our marriage recognised. We are married according the government here in the USA and according to the local mosque and according to Islamic law.
You say that 50% of familial marriages work out well in your family. That would make the average about the same here in the USA.
Nzingha,
See, that is why these people are experts at this stuff and we aren’t. All of these other factors are figured into these studies. If they weren’t the studies wouldn’t be worth the paper they were written and and would not pass any sort of peer review. I think John Hopkins, Harvard and the other centers doing these types of studies have a grasp of the facts here and the fundamentals of the science. Not being a geneticist or neurologist I would bow to their superior knowledge of the situation.
Knowing about about how scientific studies are done I can assure you that other environmental triggers and variables are suitably dealt with.
Anyway, of course Autism is a spectrum disorder and it is likely there are multiple causes for it. I do think, however, that the causes all end up affect the same particular genes involved that cause the issue. Same problem, different routes to the same problem. The fact that Autism is a spectrum disorder means very little when it comes to the cause. Cancer is a disease that affects it’s victims in many different ways, yet no one (I don’t think) claims that cancer has it’s roots in the same place. Cancer, like Autism, has many routes to the same issue.
I think at the end of the day the scientists will be able to isolate the genes that cause Autism and they will also then be able to trace it back and find out the multiple reason why these genetic mutations and changes happen. Us EE’s would call that “reverse engineering” to get to the bottom of things.
Have you thought about what happens with Umar when you and your hubby, God forbid, are no longer around? Are you confident he will get a fair chance at life given the situation of medical care in the Middle East and society? My wife isn’t that close with her family over there, so if we lived in the Middle East and passed away leaving Sinan with them wouldn’t be an option, besides, just because they are family doesn’t mean they’d take him on in the first place, or give him the progressive loving care he needs. Knowing what I know about the Middle East, there isn’t a way I could honestly take a chance of him being put in that position.
With that in mind the only countries we’d live in now are ones in the West with good and accessible medical services and a more progressive attitude. If we died I’d want to know that Sinan would get what he needs, have a good chance at a regular job and a decent life. For the foreseeable future that isn’t possible in the Middle East or most other third world countries.
The point is that there is a lot of evidence showing that while it’s not a very big deal if two cousins happen to decide to get married, but it does become problematic if it is custom.
Mariam, I did think: ”But the men can always marry one or two extra if the cousin doesn’t pan out….”
Actually, on earlier posts this was mentioned as an acceptable reason in some circles to marry more wives: They married the cousin for the family, and the second wife for love….
I am not so sure about scientist’s theories about the pre-historic past, those theories are usually heavily tinged by contemporary cultural biases.
For example: you salways read that women look for dependable men because the needed dependable men to hunt and provide food for the children.
Yet I’ve also read a study where they conclude from studying bone-structure, that the wome’s actually showed they had a healthier more divers diet, and also a more constant one, with less evidence of periods of food shortage.
Also many nomadic tribes around the world go to great lengths to get to yearly, or twice yearly meetings where all the different tribes congregate for a time so they can find unrelated spouses. Those customs are very ancient too.
The ”don’t marry too close in the family” is a very ancient rule too.
Abu Sinan–not to turn this into an autism blog, but still in keeping with American Bedu’s post about familial marriages and the aspect she raised of genetic disorders, I would urge you to read more carefully the links you gave. Like all good researchers these are quoted as reporting all the caveats of their study, including small numbers, not yet replicated results, “may be” in the analysis, etc. Moreover they are clear that
“Autism is not a single disorder. At least a significant subset appears to be various disorders—dozens if not hundreds of distinct rare diseases that end up affecting a final common pathway [of symptoms not genes--they have found, found, and continue to find multiple genes and chromosomal abnormalities].”
Also that
“The genetic basis of autism seems to be as varied as the severity of symptoms, which can range from oddities in social communication to severe mental retardation. The new study adds a handful of affected genes to the list and finds a common biological link [based on symptoms] among several of them. ”
Having written these kind of public info based on research reports, I can tell you that the tone is always one of cautious optimism–you have to be honest about your results but emphasize the positive ones.
One big problem in this study (as reported here) is normal controls–there are none. They looked only for families with an autistic child. 88 of 104 families with autistic children were consanguinous to the first or second degree (parents were first or second cousins)–probably not too far off the percentage of consanguinous marriages (to the second degree) in the regions where they did the research. Again gene abnormality isn’t necessarily inheritance. And the concern in this study beyond overall understanding was to find “treatable genes”, whether by intensive early intervention or medication (note that two pharmaceutical companies, Pfizer and Merck, were among the sponsors of the research)
Lamentably medical sciences, and particularly neurological and psychiatric sciences, are far less pure, and far more difficult to control for extraneous factors than other types of science. Fortunately, advances are made so that we no longer burn epileptics at the stake, or whip the devils out of manic depressives (at least not universally).
Your cancer analogy is partially correct but cancer really describes a cellular pathology rather than a disease and the causes are diverse and multifactorial, everything from clear environmental factors, to familial predispositions, and in combination, to specific strains of HPV causing cervical cancer (straight infectious disease model).
Insha’allah these researchers and others will continue their activities (always longterm in these fields) and discover something as highly preventable and treatable as cervical cancer now is.
In the meantime, masha’allah there are good and caring parents, like yourself and the others commenting here, and, at least somewhere in the world, supports and treatments.
Aafke–correct and funny
2nd time cause I lost my response grrr so this is in summary in case the other post shows up and I look stupid just repeating myself two different ways
@ chiara- I’ve thought about doing something for families here coping with DS.. its a thought.. and I lack time to make it a reality at this moment.
@ Abu Sinan- I’m skeptical of all ‘studies’ not just the one you referred to. I learned this long ago and I question a lot, probably my nature, and I’m not going to shake it anytime soon.
as for Umar- we have extended family here that will care for him and fill that boys world with love. They won’t be me, won’t do what I can do, won’t be as resourceful either but I can’t ask them to provide more than they can and I’m sure they would all come together to do their very best for all of my children. What I have in the US is an aging father and a brother I wouldn’t leave a plant to care for (that is worth repeating!) so what are the options.. have them in the US and if we die they go to foster care or keep them here and have them safe with family.. easy choice.
Nzingha–it sounds as if you have an excellent plan for Umar–and when you have the time doing something for or with other families would be beneficial to all.
The Chicago Sun Times chose to pick up this post:
http://www.suntimes.com/news/blogentries/index.html?bbPostId=B6kcqoGH9Pf8Bzn7nRZ5sNNoBEXKoFNY8nUdB9uN0a5nKmjM
Why do some Saudis wear trousers and thobes that are much shorter than normal. (cut above the ankles)?
Second questions: Saudis and other muslims can freely practice their faith and worshop openly in other countries. Why then, do they not allow expats in Saudi to practice their faiths openly ? Even in other Gulf States this is allowed. There are churches in other Gulf States, but not in Saudi!
Hi Sami and welcome!
Wearing shorter thobes or shorter trousers usually indicates a pious and very religious man. Some people in Saudi will say “oh, he’s like a muttawa.” But I actually know a few Saudi men who dress in such manner and while very conservative and religious, they do not fit a profile of a muttawa (religious police).
In regards to your second question, the simple answer is because that’s what the Saudi government has decreed. One can practice a faith other than islam but it must be done privately. My understanding is because Saudi Arabia holds the two holy mosques that this is one of the reasons why religious centers of other faiths are prohibited.
I’m pleased to advise that the Chicago Sun Times chose to carry this post:
http://www.suntimes.com/news/blogentries/index.html?bbPostId=B6kcqoGH9Pf8Bzn7nRZ5sNNoBEXKoFNY8nUdB9uN0a5nKmjM
[...] pair is not a national of the country? How many places in the world is a marriage more a marriage between families than between a couple? These questions are just the tip of the iceberg when it comes to Saudi [...]
[...] majority of marriages within Saudi Arabia are arranged marriages. Marriages are usually arranged within extended families and in many cases, the bride and groom [...]
I went to a wedding in Bahrain. It was a very big wedding ( over 500 women) and I notice more than normal, there were many women ( old and a few younger kids, Arabs women ) in wheelchairs. I also notice the same thing in the malls in Dubai. Was this due to ” Intermarriage”?
I saw them being taken care by either an Indian young woman or by a Philippine women.
I also notice that there are great facilities that are for handicap people all over public places.
Are there more than normal people that are handicap in places that due to intermarriage with 1st cousins? Just wondering.