ABILITY MagazineABILITY JobsABILITY StoreABILITY Awareness

Princess Sameera Bint Abdullah Al Faisel Al Farhan AlSaoud.

Recently ABILITY’s Chet Cooper traveled to New York City and met up with Saudi Arabian Princess Sameera Bint Abdullah Al Faisel Al Farhan AlSaoud. She is the chairperson for both the Saudi Schizophrenia Charity Association and the Charitable Society of Autism Families. On the homefront, she’s the mother of four, including one child with schizophrenia and another with autism. Cooper and the princess were joined by her interpreter, Abdulmohsen Al-Otaibi, PhD, who served as the director of her autism organization for three years, and is a social philosophy professor of education at King Saud University. He completed his PhD at Michigan State.

Cooper: What is Saudi Arabia doing to address autism?

Princess Sameera Bint Abdullah Al Faisel Al Farhan AlSaoud: There is now a law and a system to govern the care of those with autism in Saudi Arabia. We’ve established a center for autism in Riyadh, and I’m a member of the Saudi Autistic Society. I invite families every month to my house to talk, and we’ve also established the Charitable Society of Autism Families. I want to distribute information to all the universities and hospitals to increase awareness. I also have a child with autism, and I show people his picture so they understand my situation and don’t feel a need to hide if they have a child with a disability.

Cooper: How old is your son?

Princess Sameera: He’s 21.

Cooper: How old was he in the picture?


Princess Sameera: Which one? We have a lot of pictures, some before the diagnosis and some after.

Cooper: Is there a difference between the two sets of pictures?

Princess Sameera: Yes, there is a big difference. Earlier on, he could concentrate, and then later he began to turn his face and not make eye contact and he was not as social.

Cooper: After he was diagnosed, did you seek treatment for him?


Princess Sameera: Yes. I checked out many places, five states in the US and other facilities in Germany, Morocco and Britain among them. Finally, I brought him to Los Angeles.

Cooper: Wait, you didn’t call me when you were in LA?

Princess Sameera: This was a long time ago, maybe before you were born. (laughs) So anyway, he stayed in LA about six months and was admitted to a program for autistic individuals. When I brought him back to Saudi Arabia, I got him enrolled in another program with four other typically able kids, and after a year of this mainstreaming experiment, I placed him with kids in a regular school and it was successful.

Cooper: With visiting different facilities around the world, did you see what seemed to be working and what didn’t?

Princess Sameera: I think there are three very important points to consider.

Cooper: We only want two.

Princess Sameera: (laughs) One is family. Any center that works with autistic children should consider their family first. The second point has to do with training the autistic child to communicate with others. The third point is to get students to learn academically, socially and psychologically. The best program I saw was at UCLA, where they set the standard for research and treatment models for autism, while optimizing treatment for individuals with autism.

Cooper: When your son was in the LA program, did you notice a significant change in him after six months?


Princess Sameera: Yes. He had acquired different skills. They complemented training he had received with other kids in a Saudi Arabian program, which was successful, as well. The Charitable Society for Autism Families in Saudi Arabia is another resource; each month there are two meetings for families.

Cooper: That organization started out with meetings in your home; do you still host those?

Princess Sameera: Just for the volunteers and people who work with me in the evenings. After sunset, we write letters to government officials and review newspaper articles written about autism in the mass media. Some people come around 7 and stay past midnight, and I have to tell them to go home.

Cooper: How long did families meet at your house?


Princess Sameera: Twelve years. Recently the United Arab Emirates recognized my service by giving me an award: the Best Woman Volunteer in the Arab world.

Cooper: Congratulations. (Turning to Dr. Al-Otaibi) How did you and Her Highness meet?

Dr. Abdulmohsen Al-Otaibi: Princess Sameera met my wife when my wife was studying at the university about 15 years ago.

Cooper: What was her area of concentration?

Dr. Al-Otaibi: Her focus was special education, and the princess noticed that my wife was interested in autism issues and invited her to create a class around autism. My wife got her graduate certificate in autism spectrum studies from the University of Arkansas. She now works with the Saudi Arabian cultural mission in Washington, DC.

Cooper: You work there together?


Dr. Al-Otaibi: Yes.

Cooper: After your wife met the princess, how did you become involved with the princess’ projects?

Dr. Al-Otaibi: When I returned home to Saudi Arabia from DC one time, my wife asked if there was any way that I could work with her. I had already been writing articles about autism in Saudi Arabian newspapers, and so I asked the princess how I could help, especially as an interpreter in the US or Great Britain or other non-Arabic-speaking countries.

She also nominated me to be the director of the Autism Society, which I was for two years. During my tenure, I donated my full salary to the society. I am very honored and proud to work with the princess. She’s an amazing woman who is making history as an advocate for people with schizophrenia and autism in the larger Arabian Gulf region and beyond that within the world. She’s now working with Autism Speaks in the US.

Cooper: In all of the work that you do around the world, have you been able to pool what you’ve learned and bring it home to Saudi Arabia?

Princess Sameera: It is my hope to duplicate some of the programs I’ve observed in my travels and to create a similar system in my country. There is one simple thing that people don’t think of that is very important for autistic children: a relaxation room. If there are just four or five students in the same class, and one student gets anxious or tired, the relaxation room is very important in the center, as upwards of 80 percent of autistic children have seizures.

Cooper: What challenges do you face in making your center a reality?


Princess Sameera: Finances.

Cooper: The Shafallah Center is funded through the Qatar Foundation. Do you have a similar foundation that you can tap?

Princess Sameera: The Ministry of Social Affairs provides services for autistic children, but in many ways it’s not as far along as the Shafallah Center.

Cooper: I thought Saudi Arabia had deep pockets.

Princess Sameera: (laughs) The country has, but we need to make our voices heard within the government.

Cooper: Do you want me to call someone for you?

(laughter)

Princess Sameera: Yes, the king.

Cooper: I don’t know if he’ll take my call! (laughter)

Princess Sameera: He will welcome you.

Cooper: Let’s go together and interview him for ABILITY Magazine.

Princess Sameera: Yes, that should be no problem, and we could talk with him about autism.

Cooper: And maybe that would be a part of our first issue published for the Arabic world.

Princess Sameera: That would be nice.

After the interview, Princess Sameera, Dr. Al-Otaibi and Cooper visit the YAI Network, which helps more than 20,000 people with developmental disabilities and their families daily through its more than 450 programs. YAI is headquartered in New York but is international in scope. Perry Samowitz, the organization’s director of education and training, greets them. A woman, who walked into the building at the same time as the Princess, Cooper and Al-Otaiba, was curious, and participated in the conversation.

Perry Samowitz: YAI was established in 1957.

Cooper: So you started it?


Perry Samowitz: (laughs) I wasn’t here in 1957, but I am the longest-serving employee in the agency. I’ve been here 35 years.

Princess Sameera: What kinds of services does YAI provide?

Samowitz: We provide community-based services. As you probably know, years ago people in the US with intellectual and developmental disabilities were put into institutions. But in the 1970s, there was a lawsuit against the state of New York, and the judge ruled that those institutions had to close, and tens of thousands of people had to be resettled within the community. That was no easy feat.
When I started, we ran group homes of up to 10 or 15 people living together. The judge also said that they couldn’t just sit around; they had to be given something useful to do. (To the woman) Were you one of the first moms whose child was involved in that transition?

Woman: No, we’ve only been involved with YAI for 25 years.

Samowitz: Welcome! (laughter) So as I was saying, we had people living in group homes, and we had to look for work opportunities for them if they were higher-functioning. If they weren’t as high-functioning, they would go into what we called day programs, which has evolved into volunteer work in the community. They may not be high-functioning enough to secure a paid job, but they can still be productive. We believe everyone can be productive.

When we went to Jordan, we met Prince Raad, who’s a wonderful man. We’ve all gotten very close. At that point in Jordan, they only had institutions. And Prince Raad said to us, “Can you help us? We would like to do in Jordan what YAI did in New York.” He also visited our clinics. We have special health clinics that serve people with developmental disabilities. The prince saw that and wanted to establish similar facilities in Jordan, also. If someone has to go to a dentist and they have autism, what’s it like for them to be in a dentist chair?

Princess Sameera: And what’s it like for the dentist?

Samowitz: Right. So we had to specially train the dentists, doctors and nurses.

Princess Sameera: Do you charge fees for your services?

Samowitz: No, the government pays. We also started preschools, because you can’t wait until someone’s an adult to help them when they have a developmental disability. Early support makes a big difference. So if they’re able to diagnose a child when it is born, they often will call us and we will begin to work. We’ll do assessments, offer in-home support for the families and early intervention. We have preschools to help children get a head start, and many of them wind up going to regular school.

Woman: I just want to talk about the support that YAI gives to the parents and the families. Very often, parents who have a child with difficulties don’t know what to do. One of the great benefits of YAI is their outreach to parents and the informal network of parents which has grown up around it and who are able to partake of YAI services. This includes support groups in which parents get together and speak freely. One thing that was valuable to me was a free course on applied behavior analysis.

Samowitz: We try to support a range of needs. We look at the big picture, from when a person is born until the day they die. One of the people I first worked with, who was 60 years old when I first met her and was in an institution, ultimately got married and lived to be 92. She passed away just recently. We supported her over the years.

Princess Sameera: How many people do you serve?

Samowitz: We serve about 20,000 people a day, but that could mean something as simple as someone going to the dentist. Or it could mean a person who lives in one of our group homes—we have 5,000 of them—who goes to a day program, uses the clinic and gets a ton of services.

Princess Sameera: Are you just in New York?

Samowitz: YAI is funded mostly through New York State. We have programs in New Jersey, Puerto Rico and the Virgin Islands. But most of our work is in New York. We’re one of the biggest agencies in the country.

Woman: And one of the best.

Samowitz: That sounds better coming from one of our parents.

Woman: Absolutely one of the best.

Samowitz: We do international work, as I said. We’ve been to the United Arab Emirates. We’re going to Saudi Arabia. We have a lot of people with expertise, a lot of staff who can help. We began the process in Jordan. We helped the Jordanians open their first two group homes. It’s been a great honor for us to go to the Middle East. It’s good for everybody.

You can learn more about our agency through the tour we’re going to give you shortly. We’ll go downstairs and see two schools, one clinic, one rehabilitation center and one employment program.

Princess Sameera: How is YAI organized?

Samowitz: We have eight agencies in one. We provide education, employment, health services, group homes, day programs as well as day treatment program.

Cooper: Is each one a separate 501(c)3?

Samowitz: Yes. The network is made up of different agencies. Each agency focuses on a certain area.

Princess Sameera: But they are separate?

Samowitz: That’s right. How do you see us helping you in Saudi Arabia, given what we’re doing? What do you think the needs are?

Princess Sameera: We could benefit from information about how you formed, what services you provide, as well as your strategy for reaching people.
.... continued in ABILITY Magazine click here to order a print copy or to subscribe Or get a free digi issue with a "Like" on our Facebook page.

Saudi Arabian Princess Sameera Bint Abdullah Al Faisel Al Farhan AlSaoud
charitablesocietyforautismfamilies.org

Like article let people now in Facebook

Excerpts from the Joe Pantoliano Issue June/July 2012:

Equine Therapy — Horses Help Vets to Heal

Joe Pantoliano — He Puts the ‘Fun’ in Dysfunctional

China — A Teacher Who Moves Mountains

Saudi Arabia — A Princess Seeks a World of Change

Derek Amato — He Sees Music

Humor — Adulthood is Overrated

George Covington — The Thing About Getting Old

Articles in the Geri Jewell Issue; Humor — Adulthood is Overrated; Ashley Fiolek — Balancing Work and Play; Sen. Harkin — The Affortable Care Act; China — A Teacher Who Moves Mountains; Saudi Arabia — A Princess Seeks a World of Change; George Covington — The Thing About Getting Old; Derek Amato — He Sees Music; Joe Pantoliano — He Puts the ‘Fun’ in Dysfunctional; Asylum — Book Excerpt; Geri Jewell — A Good Act to Follow; Brad Hennefer — Loves His Tee Time; Equine Therapy — Horses Help Vets to Heal; ABILITY's Crossword Puzzle; Events and Conferences... subscribe

social media

blog facebook twitter

 

Rush University Medical Center