Saudi Arabia: Khalid Speaks Out on Autism

It is a special honor for American Bedu to interview Khalid.  Khalid is a young Saudi man who I look upon as one of my “Saudi sons.”  He’s been in the United States for several years while he obtains his advanced degree.  Soon he will be returning to his home in Saudi Arabia.  But for right now, he’s agreed to answer some questions and speak very candidly about some of the challenges faced in Saudi society.

 

 

To begin with Khalid, thanks for agreeing to this interview and allowing me to ask you some candid questions.  I’d like to start with a little bit of information about yourself.  What part of the Kingdom are you from?  How many siblings do you have?

 

It is my pleasure to be interviewed on American Bedu. I was born and raised in Jubail Industrial City on the Eastern coast of Saudi Arabia in 1989. I have one brother and two sisters.

 

How would you describe your upbringing?  Do you think you were raised in a traditional or non-traditional environment?

 

I was raised in a non-traditional environment since I brought up in Jubail away from the majority of my relatives who live in “Alhasa”.

 

I understand that one of your sister’s has autism.  At what age was she diagnosed with autism?  How old is she now?  How severe is her autism?   

 

She was diagnosed with Autism when she was six. She is 21 now and she is the youngest member of my family. Her autism category was classified as “Severe” which is the third most severe level out of four levels of autism.

 

When did you understand what autism is and how has your sister’s autism affected your life?

 

I learned about autism when I was ten; my sister is only 18 months younger than me so I did not know much about what was going on when she was diagnosed with autism. My sister’s autism affected my whole family’s life in many different ways. First, my sister does not talk so she can’t communicate with us or with anyone, which gives us a difficulty understanding what’s on her mind. Second, she has super hyperactivity, which is one of autism’s symptoms so every time we go out she would run away from us and scream loudly and even take food away from people’s hands!. Which means, every time we wanted to go out there must be one or two holding her hands to make sure she won’t run away. Third, she is not aware of the consequences of many dangerous things, which is another symptom of autism. For example she would take scissors and cut electronic cables or her hair or she would run on the street without realizing that she might be hit by a car so there must be someone watching her all of the time to make sure she won’t hurt herself.

 

What kind of care and treatment does your sister receive?  What is her prognosis?

 

My sister has been in an autism care center in Amman, Jordan since she was eight (1999). Over there, she goes to school, learns the basic life needs such as how to write, how to express what she feels, how to use the restroom, how to eat, how to brush her teeth  … etc she also plays some games that encourage children to think and analyze. Moreover, she is taught how to interact with others and she gets some medications that reduce her hyperactivity.

 

 

How did Saudi society react to your having a family member with autism?

 

The majority of people understood what she goes through when we explained to them that she is autistic. Especially when we go out and she runs away and harms other children or takes food away from people’s hands.

 

 

What provisions and resources does Saudi Arabia have for individuals with autism?  Do you think there is a good understanding of autism among Saudis?

 

I honestly don’t know much of what Saudi Arabia provides to autistics since my sister is in Jordan. However, I have heard and read on the papers many times that handicapped rehab centers don’t have qualified employees to deal with children with special needs. For example, last month a video on youtube showed how two nurses in a handicapped special care center in Afif, 300 miles west of the capital Riyadh were beating and mistreating two of the children in that center. Luckily, the two nurses were fired and sent to trial but it was not the first scandal of this kind I hear about in Saudi Arabia.

 

 

You attribute your sister’s autism due to the fact that your parents are first cousins.  Can you explain this some more?

 

Genetics play a big role in autism, and it has been proven scientifically that relative marriages are one of the main causes of autism.

 

 How common is it for first cousins to marry?  Is autism one of the most common challenges you’ve observed in Saudi Arabia in marriages among cousins? 

 

It is not very common for first cousins to marry in my family. In fact, the majority of my relatives are married to their distant relatives. There are more than 12 thousands members of my family that are related to me and we all share the same last name, which is my fourteenth grandfather’s name so many of my relatives are married to someone whom they meet like on the sixth or seventh grandfather. There are many challenges and downsides of marrying cousins, including autism and many other heredity diseases. Such as: hypertension, which I personally have because two of my grandfathers had it, diabetes, anemia and Sickle cell. Personally, seven of my first cousins have a heredity disease because their parents are related to each other. In fact, I have been just told a few days ago that my three-year-old cousin was diagnosed with autism! And my other five-year old cousin was diagnosed with diabetes because three of his grandparents are diabetics.

 

Are most Saudi families willing to talk about the repercussions of a marriage between cousins?  Why or why not?

 

Fortunately, people nowadays started to understand the possible circumstances of relative marriages and the Saudi authorities recently requires each couple who wants to get married to have some tests in the hospital to see if there is a probability that their children will get heredity diseases.

 

 

       If Saudis are aware that marriages among cousins can lead to birth defects and other health issues, why do such marriages continue?

 

Mainly due to traditions and most families and mothers prefer to let their son/daughter marry someone related to them because they think he/she will take a better care of him since she is related to him. Plus, it is a tradition in my family not to marry from outside the family. In addition, some families that belong to a well known tribe like mine refuse to let the members of the family marry someone from a family that no one can trace its ancestors and does not belong to one of the well-known tribes in Saudi Arabia, which I think is really backward

 

 

How about you?  You are still single now, but what are your thoughts on marriage?  Do you plan to marry?  Would you marry a cousin?  Would you marry a non-Saudi?  Would you marry a non-Muslim? 

 

I honestly never thought about getting married maybe because I am 22 but I am considering seriously not to marry and to remain single for the rest of my life because, in Saudi Arabia you don’t get the chance to know the girl that you mother suggested to you to be your wife. You are only allowed to see her for a few minutes with the presence of her father before you are asked to make your mind up whether you want to marry her or not. I don’t think this is the way it should be. I think there should be some more time to get to know each other before deciding whether she is the girl or not. There is no way I marry someone neither from my family nor from my tribe. If I meet a non-Saudi girl that I think she will make me happy and she is the one for me and shares many values I have, I would be more than happy to marry her but unfortunately, the Saudi authorities require all Saudi citizens who want to marry a non-Saudi to get a special permission from the Ministry of Interior, which is extremely difficult to obtain especially for younger folks. Again if I find the girl I think she is the one who will make me happy I would marry her no matter what her religion, nationality or race is.

 

 

How would you feel if a woman you wanted to marry had parents who were also first cousins?  Would you fear that any of your future children could be at risk?

 

Most likely I won’t marry her.

 

What would you like people in Saudi Arabia to know and understand better about autism?

 

I would like them to know more about autistic children and how hard it is for them to have a communication with others. Also, I want people to know that there are many gifted autistics and some of those who have a mild autism are married, have kids and even have a career so autistics can live an ordinary life too.

 

What is your advice to other Saudis who may be expected to marry first cousins?

 

I would recommend them to reconsider their decision because, I am pretty sure they don’t want their children to suffer.

 

 

If a Saudi man or woman does not want to marry a first cousin how can he or she back down without damaging family relations?

 

Personally, I don’t have an answer for this question and honestly this is one of the main reasons why I am thinking about remaining single for the rest of my life. I don’t want to marry someone who is related to me. Plus, I want to marry someone I know well. I have to see her in her ups and downs before we decide to get married. She also has to make sure I am the right husband for her.

 

Are there any additional comments you’d like to add?

I would like to thank you for interviewing me and giving the opportunity to talk about autism on April which Autism Awareness Month as many people I have met don’t know what autism really is.

 

Thanks again, Khalid, for agreeing to this interview and allowing me to ask you questions on a topic that many Saudis may not wish to discuss.

 

You are welcome.

 

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23 Responses

  1. Thank you Khalid for sharing your experience of being the sibling of a child with autism. Thank you, too, Bedu, for doing your share to raise awareness. It has been almost two and a half years since I moved to the Kingdom with my now adult, autistic son. I had many concerns about how he would be received here but I have to say, that without exception, he has been treated with kindness and generosity. Our community is small and self-contained and he is now a recognized part of it. He has, apparently, become known as the boy with the really cool t-shirts. I have been told, though, by parents of younger children, that there is a shortage of trained therapists and educators, generally in the area of special needs, and more specifically in the area of autism. That having been said, I know that efforts are being made to redress this situation. For example, there is an undergraduate degree program offered at Dar El Hekma, a highly regarded women’s college in Jeddah.

  2. Thanks for sharing this. I really appreciate hearing the perspective of a young man who has an autistic sister. Also it’s interesting hearing his point of view on all the intermarrying and how it has contributed to many hereditary diseases. I wonder how often his family gets to see his sister since she’s in another country. It’s too bad they couldn’t find a place for her closer to home.

    I’m glad Khalid wants to choose and get to know the lady he marries (if he does.) I don’t blame him for that. We should all have that opportunity.

  3. Thanks for the post. I did not know that autism was associated with first cousins marrying. I would think it is more of a problem if it is a continuous practice over time rather than a one time occurrence.

    I have heard that people with autism can have special abilities as they tune into things rather than people.

    Khalid, thank you for granting this interview.

  4. Thank you, AB, for a most enlightening interview. Khalid’s take on his culture and his religion was most refreshing.

    I was both shocked (and surprised) that half of the American states allow “cousin” marriages. This, in the 21st century, when it is well documented that such marriages contribute to genetically-inherited diseases, such as autism.

    I understand that although “cousin” marriages may be legal, only a very few partake in it. Except in the deep south maybe :)-

    http://www.cousincouples.com/?page=states

  5. Great interview Khalid! Regarding the whole issue surrounding marriage , I feel he will be pressured by his family to marry someone who they choose.The concept of love before marriage doesn’t adhere to eastern traditions, “you learn to love during marriage” is the notion that is accepted. There is a high social stigma attached to pre-marital relations ,and there are tribal/caste restrictions and wedding rules that doesn’t go well with love marriage. I’m hoping that will not be the case for him. Inshallah , he will be able to find someone who he wants to marry.

  6. Honest Abe;

    Oh that is extremely rare. You would have to be what they call a total isolated backwards hick beyond even the standard backward hicks to marry your first cousin as it it widely known that this can genetic abnormalities with children. In other words even a backwards southern hick would not do this as it is just wrong. I have a few of relatives who live in the deep south. It just isn’t really done and it is frowned upon for this very reason as it can produce a greater potential of genetic anomalies.

    I like the fact that he brings up that as a young man who has far more freedoms than women in Saudi that he and many young men are still forced/pressured by both the government and culture into situations that are both unhealthy and individually restrictive. Remember, Saudi has a divorce rate higher than the US. It is 62 percent. So the supposed Islamic/cultural system that Saudi embraces is a failure to many. It leaves children dealing with possible genetic abnormalities, unhappy people in relationships, and a situation where young people just feel trapped and stiffled under traditions, culture and religion that is both abusive and against humanity. Pretty sad when a kid of 22 tells you he would rather not get married which shows you he is unhappy with the situation but apparently has no way to affect change at least by his perception. One wonders why go back to such a society if you don’t have to.

    I remember a documentary early on about a autistic child that had been put on a highly restrictive diet which completely turned the entire disease around to pretty much a normal child and the child was deemed to be severely autistic. I thought it was an extremely interesting documentary.

  7. Think British, European and other royal families when it comes to marrying cousins. Thank goodness they’re expanding the gene pools now.

    I recently met someone who has apparently turned his autistic child into one without symptoms through food. He is a ‘juicer’. In other words juices a huge amount of healthy veggies and some fruit into a morning drink. He also eliminated most meat from his family’s diet. He says the turnaround in the health of his family has been amazing! I have a relative with several auto-immune diseases and she started juicing a month ago and many of her gut issues have disappeared and she has way more energy.

  8. It’s very enlightening to know that Khalid can bring more awareness on autism to KSA.

    I am a trained special education teacher and has been dealing with autism children for 11 years. Since moving to KSA (Khobar) a year ago, I have yet to find a place where I can contribute my knowledge and experiences. This coming July, I will be moving to Riyadh and I hope to find out if there is any autism centres or any centres cater for special needs children in Riyadh where I can make some contributions. Appreciate for the infos. Thank you in advance.

  9. Wendy, I am a juicer too!
    Many ailments and especially autoimmune diseases disappear when people turn to juicing.
    Some people with ADHD children have managed to make them healthy again by cutting out all foods with additives and E-numbers. Which basically puts you back to all basic foodstuffs. I don’t eat anything which ”keeps”. I make my own food from scratch. I buy ecological vegetables (much easier and cheaper in the Netherlands) and at least half of my diet is juices.

    Khalid sounds like a lovely guy, I wish the best for his sister.
    I wish Khalid all the best, and I do hope he will find true love in the end.
    I do think it’s really sad Saudi men and women cannot socialize in a normal, healthy, natural manner. :(
    Maybe I am soppy because I am so happy myself :mrgreen: I want to see everybody happy now.

  10. Aafke/Wendy:

    Wheatgrass – nasty stuff but great for the body. Juice one to two ounces a day. I am juicer as well. The benefits from juicing are numerous.

  11. We juice carrots, ginger and broccoli most mornings. It’s always funny when I buy carrots. Inevitably I get the “do you have a horse?” comment from someone at the store!

  12. I do have a horse and I buy my carrots in 60 pound bags.
    We share.

  13. I usually buy about 30 lbs. at a time, and I have no horse to share them with. Just my husband. :)

  14. Thanks AB for sharing this wonderful interview. For such a young man he is very insightful. I hope he can marry the person he choose. As always, I enjoy AB.

  15. O man You make me little bit sad,I appreciate this young man.He is really a great and soft heart person.Many well wishes are with you dear.

  16. Yes, very nice interview!

  17. Thank you AB for posting such an interesting interview and many thanks as well to Khalid for being so open and thoughtful in his responses. One thing that struck me was that Khalid’s sister was diagnosed at the age of 6 with a severe classification of Autism. So much positive change can occur with early intervention and yet even in the United States, it is still most common for children not to be diagnosed until age 4 or 5.

    Khalid mentioned genetics and recent advancements in genetic testing have made it so many families can receive answers and as early as eighteen months. Such testing should only occur if a child is exhibiting symptoms, but there are brief questionnaires that are often standard in well-baby visits to the pediatrician that can guide families to decide if genetic testing should be considered.

    My role at International Diagnostic Solutions is focused on special education and diagnostics and part of our work is bringing this type service to countries in the Middle East like Saudi Arabia. Genetic testing is only one part of the process with as the genetic counseling that takes place for the family can be of incredible value for understanding the role interfamily marriage in the health of a child. This is true even if it turns out that the developmental delays were determined not to be caused by genetic factors.

    Many children for whom early intervention is started at a young enough age, may make significant gains that could keep them from ever having a “severe” form of delay like experienced by Khalid’s sister. Hopefully over time, more parents will know about the options in both genetic testing, assessment, and the role they can play in early intervention for Autism and other forms of developmental delay.

  18. I would like for all of you to be aware that autism is also linked to vaccines something that is mandatory in the kingdom not so in canada. If you would like more info go to VRAN.org.

  19. I would like to inform you all that autism can be caused from vaccines which are mandatory in the kingdom not so in canada.

  20. if you would like more info go to VRAN.org

  21. This article was very eye opening. I took interest in it mostly because it tells a Saudi’s side of Autism and how it has effected his family.

    I am a special educator in Jeddah, Saudi Arabia from America. I have just started a program for children and their families who have special needs. When I arrived in Saudi Arabia I realized the services for children with special needs throughout the country were slim. So I have decided to do something about it. There are so many families here who need help and have to battle through extensive waiting lists for the few places that exist. I pray my program is beneficial for families like his, in which they can stay in their home country and have quality services.

  22. http://arabnews.com/saudiarabia/article615394.ece

    Defense Minister Prince Salman yesterday opened the Prince Nasser bin Abdulaziz Autism Center that belongs to the Saudi Charitable Society for Autism.

  23. I am pleased to announce that there is a new facebook group
    that has been developed to help network and support parents
    with special needs children in KSA. Please come join us and support
    us. http://www.facebook.com/SpecialNetworkInSaudiArabia

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