Autism cannot speak, let us

BW may 21, 2010
“There are ‘10,000’ autistic children in Oman…”
Not true.
That was just to get your attention.
We have to confess that we have no clue about the exact number of autistic children in the Sultanate and no idea of what to tell a parent with an autistic child/children or where to advice parents to go to if they have an autistic child.
If it was about physical disability, there is the Oman Association for the Disabled. If it is about cancer, there is the Oman Cancer Association…in short, for most diseases there would either be a cure, or at least an association or a centre to go to, but when it comes to autism, you are met with a brick wall.
Are you a parent with an autistic child or children? Then, you must have either taken them to the Centre for Special Education, the Creative Learning Centre, the Association for the Welfare of Handicapped Children, etc.
Or, perhaps, you would have taken them to the only child psychiatric clinic at the Sultan Qaboos University Hospital (SQUH) for the whole of Oman.

No centre
Now, ask yourself whether there is one dedicated centre for autism or whether there is an association for autistic children/adults, and you are met with a ready answer ‘no’. There is nothing of that sort.

Which is why Black & White decided to go ahead and organise a charity cum Sudoku event, which we hope will bring about much needed awareness on autism in Oman and perhaps provide a stepping stone for starting a centre for autism in Oman.

Why Sudoku?
Why NOT Sudoku? Sudoku is about numbers and if one may have noticed, autism has also its relevance in numbers and so we thought let the Sudoku lovers unscramble the numbers in their head on to the sheets and at the same time, make an event that shed light on the plight of the autistic in Oman and also take this disease from the shadows and into the light, even limelight, if needed.

Miracle man
And what best way to do that than to rope in the man, that extraordinary human being, George Widener, an autistic savant, who will inspire many to climb over the challenges that face them today, like he has done many years back. George, who despite being autistic, is today a man with incredible memory talents and an exceptional artist. George’s story is of a young man with autism and a miracle. He has led a life of anything but the ordinary. Events and people in his life, beyond his ability to understand them, forced him early in life to consider the subconscious and alternative solutions. George was born in Cincinnati, Ohio in 1962. He struggled successfully to overcome a tough inner city childhood and joined the American military at 17. He has visited many countries and been in several war torn areas. He has always had a love of drawing and turned to art seriously after being significantly influenced by his multicultural experiences. Completely self taught for a number of years, today, he is a top selling artist. He tells us how he was once struggling and lived on the streets several times, in Dallas, London, Amsterdam… But today, world famous ‘rock stars’ sometimes buy his work and invite him to their mansions in Europe and he gets to take private tours of the vaults of museums.
George has been an inspiration to many who have heard him speak and he is bound to move the autistic here, their families and perhaps stimulate even a campaign that will perhaps, one day, bring about a change in the sad situation of the autistic in Oman.
We think George will be that one shining star that will lead all of us through the confusing maze of autism.

Autistic savant George Widener's interview

Emphasise your strengths, rather than correct weaknesses
What would you say if someone told you that you are going to be 35 years, 456, 789 minutes old in 2014 and that your birthday is going to be on a Thursday by just hearing your birth date? You might freak out!
You may have every reason to, especially when you get to know about the exceptional autistic George Widener, a prodigious savant with multiple talents.
In 2004 he easily defeated a former NASA scientist ("What day of the week will June 25th be in the year 47,253?”) who was using paper, pencil, and formulas (and eventually a laptop computer) in a 'contest' shown on a Japanese TV science documentary.
Despite being autistic, progress has been made in George's life by emphasising his strengths rather than trying to 'correct' his weaknesses. All his life George has made various drawings and had numbers in his head and so this is what he focuses on today versus trying to have some career with broader interests. He is a lightning calendar calculator with a seemingly unlimited range.
He also has instant recall of thousands of historical trivia, facts, world and US census figures ("Population of Boston, Mass is 589,141 in last census") that has had some sort of interest to him. Mention the 'Powers of Two' to him and he might reel them off in rapid fire progression up to 20 digits (1, 2, 4....1073741824, 2147483648....) or so. George graduated from college at age 37 while in a special education programme for learning disabled persons at the University of Tennessee at Knoxville, eventually earning a general Liberal Arts degree, Cum Laude.
George has drawn all his life and his early artwork was of a more stereotyped savant style, a sort of recording of something he was looking at or had seen in the past. He drew landscapes and portraits. His very talented draughtsmanship gives him a range of technical abilities. He has had to work to overcome his literal nature and visual memory to create original artwork. George's emergence as an expressive, original artist came as he began to place his revered numbers, calculations, calendars, facts, machine parts, and letters into works on found paper, often napkins.
In this interview with the Black & White, George speaks about the simple side of his otherwise exceptional and unusual life.
Excerpts:
You are called a ‘prodigious savant’ with ‘outstanding computational ability’ and a ‘date genius’… do these tags mean anything to you? How do you feel about it?I know it is talking about my fascination with calendars and numbers associated with them. I have always been able to see calendar numbers in my head. I'm proud that I can do them, because I had some learning problems in other ways. I did do something original with dates when I blended them with 'Magic Squares' but I don't look in the mirror too long. I have work to do!
Who is George Widener?
George Widener is a talented self-taught working artist who can draw in a multitude of styles, often from memory. Shows his work in galleries and museums on occasion. Is diagnosed with 'Aspergers Syndrome', a mild form of autism. Had several 'low functioning' autistic people in his family.
Give us an idea of a day in the life of George Widener?
These days I am quite busy with work so my time revolves around that. I usually get up, have breakfast, and then go to the library. I work until the afternoon, then come home and go for a walk in the forest near my home. I like to read books in the evening. I am presently reading about archeology.
Do you lead an interesting life?
Well, I was once struggling and lived on the streets several times, in Dallas, London, Amsterdam... today world famous 'rock stars' sometimes buy my work and invite me to their mansions in Europe. I get to take private tours of the vaults of museums. So yes, you could say I am having an interesting life! But I've always been a positive person I think.
What do you love; what do you hate?
I love to draw. Hate is a strong word, but I can't stand being laughed at, or ridiculed, like I was sometimes when I was younger. That doesn't happen much anymore.
What do you fear? Do you fear anything?
I am afraid of certain social events people do because I can't seem to understand them. I am sensitive to sudden noises and light.
Have you ever thought of what you would have been without autism?
No, I haven't. I think I am lucky that I am not a 'lower functioning' person because then someone would have to take care of me all the time.
What is the single-most thing you love or hate about being autistic?
I think as a high-functioning autistic person gets older, they can really become a productive expert sometimes in the subject that they are interested in.
Do you miss or regret anything?
No.
What are you inspired by?
I was deeply inspired by Kim Peek, who had the world's most amazing memory, whom I met and knew and who recently passed away. Kim was the model for the movie 'The Rain Man' and was a one of a kind person. I will never, ever, forget him.
What are your dreams? What do you want to achieve?
I want to achieve a great work of art someday. I know I can do it. But it takes a lot of work and patience.
What can you tell or advice the autistic (both children and adults) in Oman?
I think it is good if you can find what you are good at, in some type of work or activity, and find some happiness with it.
What do numbers mean to you?
Numbers are an activity that I do. This year I turned 17, 533 days old on a Monday and I keep track of these things.
Do you Sudoku?
I don't Sudoku, but am going to check it out to see if I can link it to calendars.

Interview with Dr Yahya Al Farsi

An Omani Einstein or an Omani Bill Gates is waiting to be discovered
There is bound to be a genius out there among the autistic children in Oman. “Maybe an Omani Einstein or an Omani Bill Gates,” says Dr Yahya M Al Farsi, assistant professor of epidemiology and public health, College of Medicine and Health Sciences, Sultan Qaboos University (SQU). And he is not laughing.
He is dead serious. “History says that Einstein was autistic and so was Bill Gates. Perhaps, we could have a genius out there, waiting to be discovered,” Dr Yahya continued in the same vein in this interview with Black & White.
And the ones who are going to stumble on these geniuses are the teachers, counsellors, the caregivers etc. So, it was imperative that this lot are properly trained and have enough qualifications to understand and yes, even discover such talent, says Dr Yahya, who along with other dedicated SQU researchers have conducted (not concluded) the first-ever research on autism in Oman.
“Most of the developmental years are spent at school. It is very important that the teachers who spent the maximum time with the kids should know the symptoms of autism spectrum disorders (ASD) and report. During our research, no data was obtained from teachers because of the absence of a periodic record-based surveillance system for the behaviour of the children in Omani schools. Implementing such a system could be expected to result in the diagnosis of additional ASD cases.
“The peak prevalence is eight years and it’s the school going period. If we don’t implement including qualified, trained teachers/counsellors at schools, we are going to lose out in the long run. Let us look at the big picture. History says many big names were autistic. Let us jointly find that out too!”
Autism can’t speak – let us speak for it
Dr Yahya explained to us how he got into doing research on autism in Oman. “Everybody has some sort of a learning experience in their lives, probably one or more that will change their lives drastically. I have had many such experiences and one on a personal level with family as far as autism was concerned. This put me on the autism track.
Besides this, I have had the chance to interact with many families where autism was prevalent. Those were very humbling experiences that underlined the philosophies of my life.
The family members showed such level of humbleness, nobility and love that made me realise it is time we all spoke and did something about autism prevalence. “

Autism Research Group - ARG
With a vision to alleviate the suffering of Autistic Spectrum Disorders (ASD) children and their families in Oman, a small research group started its work to lead research activities concerned with ASD. The basic objective was to study the prevalence of ASD in Oman and to establish a national registry of all cases.
1.4 cases per 10,000
Oman has an approximate population of 3.5 million, 42.7 percent of which is below the age of 15. (Annual Health Report, 2008). In a nutshell the result of the study, (which is still ongoing) was that prevalence of ASD in Oman is unknown. A cross sectional study was conducted from June 2009 to December 2009 to estimate the prevalence of ASD among 0-14 year old children. A total of 113 cases of ASD were enumerated nationwide, indicating an overall prevalence of 1.4 cases per 10,000 children aged 0-14 years. Most prevalent cases were amongst boys (75 percent and among low income families. The report concluded that the low prevalence in ASD in Oman is due to under diagnosis and under reporting.
The ARG team study resulted in a very low estimate, relative to other countries, and is believed to be under representative of the actual ASD prevalence due to omission of many cases as a consequence of under diagnosis and under reporting.
ASD increasing worldwide
Worldwide, the prevalence if ASD has been growing in numbers, a dramatic rise, probably attributed to rise in awareness of ASD through media etc. But, there is no similar increase in research on autism and other child psychiatry topics in this part of the world. ASD is not a frequent subject of research in the Middle East.
In developed countries, the overall prevalence for all forms of ASD was estimated to be 60 cases per 10,000 children. A recent study carried out in Saudi Arabia, which borders Oman, revealed an overall prevalence of 18 cases of autism per 10,000 children.
Dr Yahya points out a recent research done in Oman in 2009, where the results showed that 17 percent of the high school/adolescent children reported some form of depression! The internationally accepted indicator for this is 15 percent. But, when it came to ASD cases, the registry was quite low.
Just one child psychiatry unit in Oman
“Our research used clinical information about cases from medical records from the only child psychiatry clinic in Oman, which is at the SQUH, whose database was the sole source of records for formally diagnosed ASD cases in the study’s target population. As the entire nation is serviced by a single psychiatry unit located in the capital, a majority of the population may find it logistically or financially challenging to reach the clinic for diagnosis or treatment. Others living in regions adjacent to international borders may have been using the services available in the neighbouring countries,” Dr Yahya said.
Look beyond the current illness
He noted that their findings highlighted the need for more diagnostic facilities and establishment of record-based surveillance of abnormal behaviours in public schools. “The primary health care doctors should be trained to note the symptoms. It is the first gate to discovery. If we can create a system to include the primary health GPs to have a checklist at the first point, we can have data of ASD cases. Normally the symptoms for such cases are present from 18 months onwards. During vaccination visits, these tests can be done. A GP should look beyond the current illness of the child brought to his clinic. Anaemia, malnutrition, the other developmental milestones can be checked out,” Dr Yahya said.
Every single day counts
“Every single day gone without diagnosis is detrimental to the child. Every single day counts. Early detection and early intervention can save your child from total retardation. But, the human brain is very complex. Just to cite an example let me tell you this… the stars on the sky is more in number than the sand grains on the beach… and the brain cells are more than the stars on the sky.
So, till date no one can pin point one reason to the cause of ASD. It has many reasons attributed to it. Genetics, environmental factors, an infection during pregnancy, a sick mother, many reasons... But, we have no say at all on these factors. What we can humbly do is make a system that will help in early diagnosis,” he added.
Don’t waste time
“Let us not waste time, let us speak for autism, about autism and create the much-needed awareness for autism in Oman,” Dr Yahya concluded.
(Autism research group is a research group formulated at the SQU in order to lead research activities concerned with autistic spectrum disorders. It is made up of a group of academicians and professionals who share common interest in ASD research. Founding members: Dr Marwan Al Sharbati, MD, associate professor of child psychiatry, SQU, Dr Yahya Al Farsi, MD MPH, DSC, assistant professor of Epidemiology and Public Health and Dr Mostafa Waly, MPH, PhD, assistant professor of nutrition, SQU.)
By adarsh Madhavan, Priya Arunkumar, Najib Al balushi