Life With Autism is Full of Challenges

Reporter Anna Egutkina meets some special children and their carers

Jakarta Globe, Anna Egutkina, May 8, 2013

Muhammad Valdy Fadhyo. (JG Photo)

A teenage girl is sitting peacefully in the corner outside Mandiga, a school in South Jakarta for children with autism. She seems to be in another place, lost in a world of her own, humming and squeezing a plastic straw in her hand.

Unexpectedly, she jumps up and runs around, screaming loudly and twisting her face into a variety of expressions.

Unpredictable and repetitive behavior is typical for children with autism, a disorder of neural development that first appears during infancy or childhood. Symptoms and severity vary greatly.

Nuha Fithriya Nafisa,14, does not speak, and sits in the bottom 20 percent of the autism pyramid, meaning significant cognitive improvements will requires enormous effort from her parents.

“Nuha was first diagnosed with autism at the age of 1 year and 2 months. My wife and I tried to deny it and search for options to cure our daughter, but deep down we knew Nuha was different from other children,” says Nuha’s father Krisnadi Yuliawan Saptadi.

Nuha grew up as a very active child who struggled to sit still. She never made eye contact with her parents. The tendency to avoid eye contact is a pervasive trait among autistic children.

“Some 10 years ago we used to force autistic children to look us in the eye, but nowadays we do not do it anymore as the understanding of autism has increased,” says Adriana S. Ginanjar, a psychologist and principal of Mandiga. The school has some 20 students and around 30 more attending the afternoon individual therapy sessions.

“We teach children to count, read, write and also useful everyday knowledge, for example how to behave in a supermarket. Of course, the levels of the students are very different and some can only learn around 20 new words,” Adriana said.

When it was founded in 2000, Mandiga was the only school for non-verbal autistic children in Jakarta.

Nuha has attended Mandiga since she was 2 after her father discovered the school through Yayasan Autisma Indonesia (Indonesia Autism Foundation).

“This school and therapy center is like a blessing, otherwise I have no idea how we could afford even the basic education and therapy for Nuha. I am just a freelance journalist, I don’t earn much” Krisnadi explains.

"I try to avoid thinking about Nuha’s future, because it simply hurts too much"

Krisnadi Yuliawan Saptadi, father of Nuha

“In Indonesia, all the therapies needed have to be paid for by parents. A middle-class family struggles to pay for the full range of therapy, since it is very expensive,” confirms YAI founder and chairwoman Melly Budhiman.

“No insurance company is willing to take on an autistic child. The government has just begun to realize the needs of autistic children during the past two years, but nothing concrete has been done to help them yet.”

Until she turned 8, communicating with Nuha was almost impossible. Her parents invited home therapists to teach her, but nobody knew whether Nuha actually digested the lessons or had any understanding of her surroundings.

“I had no idea whether Nuha had any thoughts at all. But when I almost gave up hope of ever communicating with my daughter, one of the teachers at Mandiga managed to ‘unlock’ Nuha’s silence by teaching her to type with a simple device,” Krisnadi recalls.

That turned out to be a massive breakthrough, with Nuha able to absorb more details and have a better understanding of things. She even claimed that she had learned to read at the age of 4.

Before her interview with the Jakarta Globe, Nuha, who has also had some of her poems on display in several autistic exhibitions, typed on her father’s computer: “I want to look good when I meet the journalist, I don’t want to look like a weird kid in the picture.”

“But do not get the wrong impression. Even though Nuha’s typing capability has improved over the years, typing is still hard for her,” Krisnadi says. “One short answer can take hours to type. Between letters she might scream, jump or run around, so communicating with her is still extremely difficult and requires lots of patience.” 

Nuha Fithrya Nafisa. (JG Photo)

Typing is also a burden for Nuha as her mind often works faster than her typing skill level, which has lately left her feeling frustrated and not as eager to type.

But during the interview, Nuha reached for her father’s phone to type a message. “I feel shy in front of the journalist,” she wrote in Indonesian after several minutes of typing.

The afternoon classes at Mandiga are over, and it is time for Nuha and her father to head home. Nuha’s repetitive behavior continues as she sways from side to side and knocks things over. The nature and behavior of a severely autistic child are not easy to understand. It may take years to adjust daily life to fully support the child’s needs. Krisnadi calls it a “never-ending process.”

“Sometimes I still think ‘Why did Nuha turn out like this? What would her life have been like otherwise?’ It’s a question of a lifetime,” Krisnadi said.

“I try to avoid thinking about Nuha’s future, because it simply hurts too much.”

The number of children diagnosed with some degree of autism is increasing alarmingly all over the world, and Indonesia is no exception. Data collected by the Autism Research Institute in San Diego estimated that 1 in 500 children was autistic in 2000. But recent US studies show 1 in 88 children are diagnosed with an autism spectrum disorder, although some manage to shed that label as they grow into adulthood.

The prevalence of autism seems to be increasing in Indonesia, although this is undoubtedly due in part to increasing awareness of the condition leading to more diagnoses. Poor record-keeping means a valid statistical analysis of autism across the country is difficult. 

Nuha and her father. (JG
Photo)

“Autistic kids are found on every island. We only know about those whose parents can afford to come to Jakarta for diagnosis and treatment, but there are many families who cannot afford to treat their autistic children,” Melly explains.

The chairwoman emphasized that there is a spectrum of degrees of autism. Those children with a diagnosis of mild autism detected in early childhood, who receive intensive treatment, and have normal to high IQs, are able to attend regular schools. Some earn university degrees and live a normal life.

One of them is 18-year-old Muhammad Valdy Fadhyo. Despite being diagnosed with autism at the age of 2, he attends a regular school.

“Sometimes I have concentration problems and everything goes blank. I have also experienced bullying. At school students would stick a piece of paper saying ‘crazy’ onto my back,” Valdy said.

“When Valdy was diagnosed with autism in 1996, there was very little information about it available. Even the doctor could not explain it properly,” says Valdy’s mother Yaty Nurhayati Rusli. “In 1997 I turned to YAI for advice, and Dr. Melly Budhiman helped us to get therapy and suitable medication.”

“At that time the increasing prevalence of autism was not understood. There was panic in the community. Autism was thought to be a new infectious disease, and children with autism were being ostracized,” Melly said.

For many, autism is an incurable disorder, but thanks to the medication and therapy in his early childhood, Valdy’s symptoms have eased with age. While people may notice his repetitive behavior and occasional lack of concentration when keeping a close eye on him, Valdy does not let it get in the way of his dreams.

“I am interested in history, so I want to become a history researcher. I am planning to go to State University of Jakarta. I have never been abroad, but I would really like to go to Europe and see a football match. I am a big football fan, Arsenal and Barcelona rock,” Valdy said.

The young man has also won several swimming competitions for regular children. “I put Valdy in a swimming club when he was 8, and I am proud of his achievements,” Yaty said. “As a mother of an autistic child, I would like to say, ‘Never give up.’ ”

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"THE NEXT 18 YEARS"–  Dec 2, 2012 (Kryon Channelling by Lee Caroll)

(Subjects: You are looking  at a Quantum event, clearing a filter - Portal pineal , Higher self to step forward and communicate to You, Still remains in 3D but exposure to multi dimensions, Evolution of humanity, Intent, Mayan Calendar, Midpoint on 21-12-2012, 26.000 Years, Milky Way, Nostradamus, 1987, Beginning to a New Time, Channellers/Teachers, Center of Galaxy – Black hole, Bridge of Swords, Pleiadians, Children, Inventions – The discoveries (e.g. : Airplanes - Medicines – Radio .. ): These new Discoveries were given all over the planet when Human consciousness was ready for it. New Inventions are coming, the timing depends on how the middle East problems are solved, Biology reaction of quantum energy; new radio of the future, seeing quantum energy, when it is revealed all science books will have to be rewritten, This will be an AHA moment – be possible to communicate with the rest of Galaxy, NASA, Church/Religion will be effected the most by these discoveries, The quantum discovery will see the grid, life, gardens and will redefine life, DNA (3 billion pieces) evolving piece DNA are chancing, Gaia/Humanity are linked, new instruments will start to reveal the DNA variance, Evolution revealed: Autistic children have born with the removal of their 3D structure in the brain, Gaia/Spirit are testing these quantum beings  (Evolved DNA), Universe central clock = Rifs,  Globally there will be only 5 currencies, Wars on earth will be declared barbaric, Middle East, Global Unity, .. etc.)

Human Evolution –  27 Sep 2008 (a message from Kryon channeled by Lee Carroll)

“.. What do you think the Human brain can really do? What do you think it's built to do? Let me give you an example of what your society has come to accept as an "unbalanced person." Some of you think it's a "sick person." Let me talk about the autistic one. Let us talk about autism in what you call the most severe case.

Blessed is the autistic one who has come to this earth to show you what future Human evolvement looks like! They spend a lifetime trying to figure out linearity and it frustrates them. Blessed is the savant who the earth looks at and calls unbalanced. For the Humans who do this cannot see what they don't understand. The autistic one is able to get up off the paper and be in color! Many of the autistic ones can do what your calculators can do on your desks, did you know that? And they don't need a calculator! Give them a problem - two digits multiplied by three digits. Now watch how fast they give you the answer. Because they're not linear! Ask them what weekday the 13th of August will be in 2012, and they'll tell you, and they don't need a calendar. You might say, "What kind of a mind can do that?" I'll tell you - a nonlinear one without the walls in the brain that you have.

Have you ever thought about that? The autistic have a nonlinear mind. The barriers are dropped. Can you imagine the frustration of this Human? Here he is in a world of black and white while he is in color. Not only that, you want him to go in a straight line when he is used to all directions at once. This also explains why the only energies that will work to calm him are interdimensional ones - music, art, and love. Does this start to make sense to you? (see below)

What is taking place, dear ones, for all to know and see and understand, is that very, very slowly you have the linearity of the Human brain starting to be reduced. Unlike the autistic, it will be in ways that will still be balanced and make sense. In other words, you will be able to move in and out of quantum thought any time you wish in order to live in a linear, 3D existence, but have quantum consciousness. It will be a return to a form of consciousness that Lemurians had, but with the wisdom of the ages that you have collected. This will not be fast, but the forerunners of that are already here.

I'm going to give you some attributes of Human evolution in a moment, but let's return to the autistic ones. Many reading this are very concerned about autism. You wish to know why there are so many autistics being born. You say it's beyond coincidence that there are suddenly so many! There's more autistic children being born today than there ever have been on this planet. Humans are scurrying around wanting to know what's wrong. Is it the chemistry of the food? Perhaps it must be vaccinations! Some are saying, without any proof, "Yes, that's it - vaccinations must be it." You are grasping at almost anything to solve the puzzle of why so many autistics are arriving.

Yet very few Humans, if any, have looked at the puzzle and said, "Perhaps we're evolving, and this is the first wave of what we're going to see?" Not mentally unbalanced, but nonlinear thinking! This is, indeed, the case. You are seeing a form of evolution and you are calling it odd and unusual. It's simply those who are coming in early with activated quantum DNA. This early forerunner has DNA activated in an uncontrolled way, and so learning is needed to know how to make sense of it all. This is what they are doing, and each generation of savant will have a better time of it, figuring out what is linear and what is not.

Watch the autistic child go through what they must do (autism in its most severe form). They are so nonlinear that there is incredible frustration in trying to linearize even the Human voice as you speak to them. They will do the same actions over and over and over, trying to linearize the nonlinear. The linear walls are gone in their brain, and they have to learn to build the ones that they need. Humans then see them as a problem, and it's not a problem. It's a form of gifted children who are helping this planet to grow. Blessed are those who come into Earth as the new wave of consciousness to show you where it's going. They are setting the stage for a new kind of Human. For this quantumness will develop in a balanced way where many will have the autistic talents where they want them, and the linear when they want that. That's what the Human mind is capable of - being quantum when they wish to be. That's a return to the way it was given to you.  ‘’

You are Multidimensional - Celebrate Your Life! -  6 April 2008 (a message from Goddess of Creation channeled by Shelly Dressel)

Question: Why are so many new humans developing autism at this time?  Is there a purpose? Is there something we can do to assist them?  And then in addition to that, is there a correlation between autism and Alzheimer's?

Goddess: Autism is very much on people's mind at this time upon the earth.  It is a term that has been given to many children.  It is a definition that people give to a child as a means of trying to understand their behavior or how they think or how they are within their life.  Autism as you know it right now is but a fraction of what it truly is going to indicate in the future.  Many of the individuals that are being termed autistic are not necessarily autistic.  Autism in and of itself is a disconnection within.  Or you could say it's that these people have a different way of being able to communicate from others around them.  So when we say disconnect, it's not that they have fully disconnected with the other individuals; it's just that they are vibrating and living and experiencing life on a different level or a different plane.

Many have said that those who are autistic have their feet in two different dimensions or in multiple dimensions; yes, that is true.  Many have said that those children who are autistic have a short in their wiring as if there are aspects that are not working in this individual and this I would like to disagree with.  What's happening is, you are getting children especially who are of very high vibrations that are incorporating more of the crystalline vibration and less of the dense energies that have been upon the earth for the last several thousand years.

Therefore the electrical impulses that move through a crystal as opposed to the electrical impulses that move through a regular individual we shall just say or someone with regular wiring, there's going to be much less resistance, therefore their whole metabolism, everything about them is functioning on a completely different basis.

This journey tonight was to assist each one of you in recognizing just how much you are moving between dimensions.  These children that come in with these special gifts are used to moving (between dimensions) and they do it unconsciously.  To them, their sense of awareness, their sense of reality is very different from your own.  They may live in other realities while their physical body is here upon the earth.  Provide them with the structure that they may need to be able to function in society but also recognize that these are highly evolved individuals and respect that about them.

There may be crystals, there may be colors, there may be vibrations, things that emanate a vibration that assist the children in feeling more comfortable in their skin, in their reality.  If you are one of the individuals that would like to work with them or you find yourself perhaps having a child with these symptoms, go and open your senses and communicate from that of an expanded consciousness from the fifth, sixth or even seventh dimension.  Communicate from your heart, communicate without words, communicate through feelings and energies and you will find there's a great deal of information they are sharing with you.  These children are extremely sensitive so be aware of that and what is in their environment.

When it comes to Alzheimer's, there are some parallel pathways that one could point out.  Alzheimer's is a means of an individual beginning to cross over, beginning that journey back to this side of the veil but they have not yet fully chosen to return so they move at their own pace, experiencing whatever it is that they seek to experience.  And that is one reason why Alzheimer's seems to affect people for years at a time.  So while there are some similarities, that's as far as that goes.  Alzheimer's is a time to love and nurture an individual and again accept that this is their choice and this is their path.

Towards the end they are spending more and more of their reality in this other dimension.  For some it's a means of allowing them to feel comfortable with where they are going before they transition.  What you can do with them is also communicate from the heart, communicate without words. Assist them in being comfortable in other vibrations and assist them in being comfortable with the light and they will transition when the time is right for them.

I knew that this was something that was affecting many, many people and that is why I chose to give it a little bit more time and connection, and I thank you all for your patience. 

"THE THREE WINDS" – Feb 23-24, 2013 (Kryon Channelling by Lee Caroll) (Subjects: Humanity, Home - other side of the veil, Wind of Birth - Birth, Wind of Existence - Life, Wind of Transition - Death)