My feeling after watching Ocean Heaven (海洋天堂)

Kind of Sad, Scare, Helpless and Hopeless. Any good backup plan before I die? I cannot live forever ...

http://en.wikipedia.org/wiki/Ocean_Heaven

Miracle please..

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Amazing Umar

Twelve year old Umar, a Malaysian autistic child, amazes at the Kidzcare concert at Dewan Filharmonik Petronas with the song " I dreamed a dream"



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Parents Often Miss Subtle Autism Signs

The symptoms of autism tend to emerge in children after six months of age, with a loss of social and communications skills that is more common and more subtle than previously thought, according to a new study that questions previous assumptions about the progression of the condition.  

At six months, children with autism spectrum disorder demonstrated behavior similar to other children, gazing at faces, sharing smiles, and vocalizing with similar frequency, researchers reported online in the Journal of the American Academy of Child and Adolescent Psychiatry. 

However, autistic children displayed fewer of these behaviors as as they got older, and from six months to 18 months the loss of social communication and skills typically became clear. 

To read more click here...
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How to handle a special child

I was touched by this presentation about Randy..

http://www.lostcausekidmovie.com/
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SOS! Autism Centre Closing Down - 14 June 2009

What is Autism? Kindly click here for google Information!

Both my sons are suffering from acute form of autism, and they have been going to this center for the past few months. This center was funded by a Kind Businessman via charity donation. Hence it has been offered as Free Service to those parents who cannot afford the full commercial service. I am one of those parent who need Early Intervention Program and cannot afford it.

The center was headed by a very experience teacher in autism management and intervention. He is a retiree and if he left this job I don't think he will be actively working for the good of autistic kids again. I want to secure his service and take over the operation of the center. I have the business experience and also autism management experience to turn this around.

We are not going to provide a free for all kind of services, but will be very affordable. We will have a trust fund setup to help those who cannot afford to pay for the service. Time is running out, 14 June 2009 is the deadline for the Current Center to cease operation. I would like to take this opportunity to thank the owner of the current center for his contribution in past years.

Why am I here asking for help? I have no other way to go and seeking the help from whoever I can get my hand on to. We need the following: -

1. Premise - prefer a corner lot house with some garden area where we can setup sand and water therapy area.

2. Musical - Since autistic kids are very artistic and musically inclined, I want to setup some musical class to explore their potential. Any good working Piano or Electronic piano are needed. Can Yamaha donate some? Anyone who know someone in Yamaha?

3. Art - Art supply for painting and others

4. Renovation - Can some good soul help to pay for the renovation and furnishing of the center?

5. Telecommunication - Telephone, Fax and Internet access

6. Funding - We need at least one year of funding before we can be self funded. I will work out the requirement once we have more people come into play and willing to help

7. Teaching material - I have plenty in my house becasue both my sons are autistic and I have invested over the years.

Anyone can help me to published all the above? I have 2 weeks to put thing together before they closed it down. 20 kids will be affected if the center is closed down without giving them an alternative to go.

Update


29 May 9:32pm : Immediately we need a place to move all the material to. A place where we can start to put all the thing together. Funding can be later since we need a place to continue teaching those kids after 14 June 2009.

For those who ask me about the account number, I will ask NST tomorrow to see if they can help as independent party. Using my account will be a BIG conflict of Interest.

If you want to help to donate cash, piano, or anything that we can use. Please send me an email at Shiokx@gmail.com with the subject line of "I love to help"

29 May 10:11pm: A few friend comment that my english is really suck and they cannot really understand what am I talking about. Since I am an engineer by training, let me put it in point form: -

• The current Autism Center will cease operation on 14 June 2009 (CONFIRMED)
• 20 kids including my two sons will have no center to go after 14 June 2009
• We negotiate with the owner to take over the material and furnishing
• We need to find a new place, a corner lot house is ideal because we need outdoor/garden to setup Sand and Water Play Therapy
• We Have Not Setup a company just yet
• The idea is to have a SDN BHD as Center. This will be run as normal business center but provide affordable rate of service. The main Objective is to survive by itself.
• The SDN BHD Center will setup a trust fund to manage donation to help those needy.
• Immediate we need a House, Renovation and Funding for at least 1-2 years for Teachers and Operating Cost!

30 May, 12:55am: I have decide to publish my personal account number in Maybank! First I just did a statement summary of my Bank Account as off 30 May 2009. 00:52:23. Please refer to the attached print out from MayBank. We can trace backward from today onward and I am not going to use this account for any other purpose other than the center (Please double click on the image for larger view)



I have also done some budget for the initiate fund required. We would need RM40K to last us until Dec 2009



The following is my Maybank Account detail: -

Account Name : Yong Yek Ming
Account Number : 164847018858

or Paypal

30 May, 17:31pm: I belief this is Zorro Account Number. If you feel more comfortable to donate to his account instead of my Maybank, please do so and the cause is the same.



Update 4 June, 2009: We have received pledge and cash donation, Casio Keyboard and personal help





Click the above image for full or larger view. Thank you very much for your support.


Regards
Yong Yek Ming aka Shiok Guy

+60 12 208 2818 

Brothers, Sisters and Friends who highlighted our SOS call (pls email me if you carry our SOS call): -

• Zoro-Unmasked
• Niamah!!!
• Hornbill Unleased
  
• Malaysia For All
  
• Dream A Little More Dream 
  
• RUN IN DIVERSITY 
  
• YITYIENG TAN
  
• onelikming's Mansion
  
• Susan Loone's Blog
  
• jelas.info
  
• Eyes Wide Open
  

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The Picture Exchange Communication System (PECS)

Since my elder son is still non verbal at the age of 9, and we have decided to start PECS properly and correctly this time round.

I will need some help! Any member/reader who know of Video, Book and Material please leave the information at the comment section of this blog. You inputs are very much appreciated

Anyone who like to contribute all PECS related material, Book, Video and etc please email to me Shiokx@gmail.com. Your contribution will not just help my son, but all those within Malaysia who happen to want to use those Resources. Thank You!

Regards
Shiok Guy

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Autism insurance bill passed by New Jersey Assembly

Autism insurance bill passed by New Jersey Assembly 

Posted by cstetler May 21, 2009 16:05PM

Autism therapy should be covered by insurance companies, the New Jersey Assembly voted today.

The New Jersey Assembly today approved a bill that will require insurance companies to cover the cost of therapy for autism, which affects 1 in 94 children in New Jersey, making it the state with the nation's highest rate of autism.

The proposal requires health insurance companies to cover the cost of autism treatment deemed medically necessary, including speech and occupational therapy, with an annual cap of $36,000. It also mandates coverage for behavioral therapy, which includes exersizes like helping an autistic child learn to make a sandwich.

If the measure is approved by the State Budget Committee, New Jersey will become the tenth state to enact such a law.

***** In Malaysia *****

If you have difficulty cover your child within Malaysia, do speak to me and we see how we can get it done legally. Email : Shiokx@gmail.com or Call +60122082818


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Erasing Autism

Erasing Autism

Scientists are closing in on the genes linked to autism. So why is Ari Ne'eman so worried?

Claudia Kalb
NEWSWEEK
From the magazine issue dated May 25, 2009

It's spring in Washington, and Ari Ne'e-man, with his navy suit and leather brief-case on wheels, is in between his usual flurry of meetings. Ne'eman is a master networker, a guy you'd think was born in a campaign office and bred in the halls of the Capitol. He's fluent in policy-speak and interacts seamlessly with high-level officials (he's just had lunch with the acting vice chair of the Equal Employment Opportunity Commission) and inquisitive reporters alike. He's formal but sociable and has a well-timed sense of humor. He also has a problem with velvet. I knew this about Ne'eman—he'd mentioned it when we first started talking more than a year ago—but now, in a D.C. coffee shop, he gets into the sensory details. His father used to drive a car that had fuzzy velvet-like cushioning, and it made Ne'eman crazy to sit in it. "I'd wince because I'd think about how it would feel to get that under your fingernails," he says. I think I see him shudder at the memory.

Ari Ne'eman is 21 years old and has Asperger syndrome, a high-functioning diag-nosis on the wide-ranging autism spectrum. Ne'eman's velvet aversion is triggered somewhere deep in his brain, a brain that he happens to relish. He doesn't want anybody to mess with or, God forbid, cure his Asperger's. It's who he is, who he's always been. It's why he's had ob-sessive interests since toddlerhood. At 2½, he saw a dinosaur skeleton at New York's American Museum of Natural History and announced, "That's a pterodactyl." From there he fixated on baseball, reciting players' names and stats ad nauseam, whether or not anyone was listening—a behavior experts call perseveration. Later it was Constitutional law. His friend Ben DeMarzo remembers driving with Ne'eman and two other classmates one high-school weekend. DeMarzo and the others wanted to listen to music—the Beatles were a favorite—but Ne'eman had other plans. "Ari made us listen to Supreme Court oral arguments. It was brutal," DeMarzo tells me. He was outnumbered—how'd he win? I ask. DeMarzo laughs. "Ari always wins," he says.

He certainly puts up a fight. Ne'eman is officially studying political science at the University of Maryland, Baltimore County, but he also runs the Autistic Self-Advocacy Network, a nonprofit he founded in 2006, the year after he graduated from high school. The task he has taken on is daunting and controversial: he wants to change the way the world views autism. Autism is not a medical mystery that needs solving, he argues. It's a disability, yes, but it's also a different way of being, and "neurodiversity" should be accepted by society. Autistic people (he prefers this wording to "people with autism," a term many parents use, because he considers the condition intrinsic to a person's makeup) must be accommodated in the classroom and workplace and helped to live independently as adults—and he is pushing to make this happen for everyone on the spectrum. They should also be listened to. "We're having a nation-al conversation about autism without the voices of people who should be at the center of that conversation," he says.

Ne'eman's network has local chapters in 15 states, and he works closely with organizations like the EEOC and the American Association of People With Disabilities. Neurodiversity activists see their mission as a fight for civil rights, and Ne'eman and others are willing to stir un-rest. "Ari's very straightforward," says Lee Grossman, head of the Autism Society of America, who supports many of Ne'eman's efforts. "He tells it like it is from his perspective." Ne'eman has taken on powerful organizations, specifically Autism Speaks, the largest science and advocacy group in the country, be-cause he believes they rely on fearful stereotypes and focus their research too heavily on what causes autism as opposed to improving quality of life for autistic people today. Last year he helped stop an edgy "ransom notes" ad campaign created by New York University's Child Study Center to raise awareness about autism. One said, "We have your son" and are "driving him into a life of complete isolation." It was signed "Asperger Syndrome." Ne'eman was appalled. "There's a misperception that autism is some thief in the night that takes a normal child and places an autistic child in its place," he says. "That's not true."

The autism spectrum itself, however, is a universe with multiple galaxies, including nonverbal toddlers who bite themselves and college grads who can't tell the differ-ence between sarcasm and seriousness. This complexity leads to passionate and conflicting viewpoints. Not everybody stands behind Ne'eman, and some adamantly op-pose his views. One major area of contention: scientific research, which includes the hunt for autism genes.

I knew Ne'eman had a surprising outlook on this and figured he'd have something to say about the recent news that scientists have found common gene variants that may account for up to 15 percent of all autism cases. This is big in a disorder that varies so enormously from one individual to the next. Environmental factors also play a role, but if scientists can test for specific genes—most of which have yet to be discovered—they may be able to intervene much sooner to help kids. One day they might even find a cure. This is exciting for parents who want to understand the roots of the disorder. Therapies—some helpful, some shams—vie for their attention and their pocketbooks, and they'd welcome better, more targeted treatments. But the new genetic advances concern Ne'eman. He doesn't believe autism can be, or should be, cured. His ultimate fear is this: a prenatal test for autism, leading to "eugenic elimination." If a test is developed one day, it will be used, he says. And that means people like him might cease to exist.

When I press Ne'eman on genetic research—doesn't it have some merit?—he says he doesn't oppose it outright, but he believes scientists must consider the ethical implications of their work far more carefully. Already couples are testing embryos for diseases like Huntington's, then choosing to implant only the healthy ones. And who can blame them? But autism isn't a fatal condition. Should people without the disorder be allowed to judge the quality of life of someone who has it? "That is a message that the world doesn't want us here," says Ne'eman, "and it devalues our lives."

The prospect of no more Ari Ne'emans—whether you agree with him or not—is haunting. Termination of fetuses with Down syndrome is routine today; given the fear that autism inspires in parents, why wouldn't it follow? And what would our world be like without autism? The vast differences among individuals on the spectrum make the notion even thornier: will parents start demanding to know whether their fetus will be low- or high-functioning? But it's also impossible to ignore the parents who say they'd do anything to free their children from isolation and pain. Some feel so hopeless so much of the time, they do wonder in private if their children would have been better off not born. And who can blame them?

Ne'eman battles a strange kind of image problem: his critics accuse him of not really being autistic. His mother, Rina, is particularly sensitive about this. "People who see Ari today have no idea where he's been," she says. As a young child, Ne'eman was verbally precocious but socially challenged. "I didn't understand the people around me, and they didn't understand me," he says. He was bullied and ostracized—back then he didn't look at people; he flapped his hands and paced incessantly (he still does both today); he brought newspapers to elementary school as leisure reading. "I think the word 'freak' may have come up," he says. He was, at one point, segregated from his peers in a special-ed school. That led to struggles with depression and anxiety so severe he would pick at his face until it bled. I asked Ne'eman how he manages all the professional mingling he does today. Small talk makes him uncomfortable, but he's learned to play along. Still, none of it is easy. "You come out of a meeting and you've put on a mask, which involves looking people in the eye, using certain mannerisms, certain phrases," he says. "Even if you learn to do it in a very seamless sort of way, you're still putting on an act. It's a very ex-hausting act."

He remembers being taught in social-skills training that when people are happy they smile with all their teeth, and when they're sad they wear exaggerated frowns. "I was always wondering, 'Why is everybody around me neither happy or sad? They don't have emotions'," he says. When you're autistic, social interaction can be like a foreign language: no matter how fluent you become, you're never a native speaker. Katie Miller, a fellow activist, jokes that "Ari is the only autistic we know whose special interest and talent lies in networking." But, she says, "it didn't come naturally. He's learned it the way every-body else learns algebra." Ne'eman has a way of taming the stress he feels: he wears a tie because it puts a soothing pressure on his neck. "It's a good way of calming my anxiety," he says.

One of Ne'eman's latest efforts is a new public-service announcement called "No Myths," which he helped create with the Dan Marino Foundation, a funder of autism research. In it, Ne'eman appears in a red sweater and tie along with others on the spectrum, including a man who speaks through a communication device. "Our futures have not been stolen," Ne'eman says. "Our lives are not tragedies." The message is clear: We stand before you. Don't make us go away.

URL: http://www.newsweek.com/id/197813

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Autism's lonely questions

Autism's lonely questionsby The Oregonian Editorial Board
Friday May 15, 2009, 12:33 AM

Without better research, Oregon families will keep exhausting themselves looking for answers

If any medical condition warrants more attention and research, it is autism. The uncertainty surrounding this common brain disorder takes a terrible toll on families -- especially in Oregon, where diagnosed autism rates are higher than the national average.

It is a condition characterized by questions rather than answers: Who will help us? Will I ever connect again with my child? How much hope should we have? Do any treatments work, and what if we can't afford any of them?

No family should have to face these questions alone.

About 1 in 150 children in the United States has an autism spectrum disorder, according to the Centers for Disease Control and Prevention. The rate in Oregon is considerably higher. Some estimates based on school data peg the number as high as 1 in 87.

Behind the numbers are a thousand stories of parents struggling to cope. They are told the disorder is incurable, but lately they've been peppered with stories of miracle cures. They read about various promising behavioral treatments, which tend not to be covered by health insurance or offered through the local public school.

They are told autism is biological. Or maybe environmental.

On top of all that come the dirty looks at the grocery store.

Perhaps this helps explain why disagreements within the autism community can be so fierce and personal. The stakes are so high, the parenting can be so lonely, and the research is still so thin.

Portland State University is hosting a statewide conference this weekend about educating children with autism. The keynote speaker, Dr. Laura Schreibman, is a longtime advocate of basing autism treatments on good science and not on anecdotes and testimonials. She's a controversial figure herself, at least among people who think she dismisses promising new treatments.

But Schreibman brings up the right point: The need for better autism research is painfully clear.

The federal government is preparing to invest $1.1 billion in "comparative effectiveness research," which will evaluate and rank various therapies for different health problems. The Obama administration also intends to boost funding for medical research in general.

It's not clear whether autism will be treated as a priority area, but it should be. Without better methods to diagnose and treat autism, and without a better understanding of what causes the disorder, families will continue to bankrupt themselves looking for homegrown cures. These families need more guidance. So do the health insurers and school districts that are supposed to act as partners.

We don't know the answers.

We're still learning the right questions to ask.

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Early tests for autism

Q. Is there any early way to tell if a toddler might have autism?

A. There is no standard test yet for autism, a brain development disorder in which children have impaired social interactions, difficulty communicating, and use repetitive words or actions. But new findings from researchers at the Yale Child Study Center in New Haven hint at one possible way to identify autism earlier: track a child's eye movement.

If someone is talking to the child, and the child's attention is focused more on the speaker's mouth than the eyes, that may be an early sign of autism, researchers say.

Normal children focus on the eyes, and autistic toddlers, by failing to do so, "are missing rich social information," said psychologist Ami Klin, director of Yale's autism program.

"The mouth is the place where there is the greatest amount of audiovisual synchrony," he said, "which raises the hypothesis: What is the experience these children have when facing another human being?"

Dr. Thomas R. Insel, director of the National Institute of Mental Health - which partially funded the latest study, published online in the journal Nature - said in a statement that the research shows for the first time "what grabs the attention of toddlers" with autism spectrum disorders. Not only does this suggest potential diagnostic tests, he noted, but it may also suggest ways to re-direct visual attention in these children.

Usually, children with autism are not diagnosed until they are 2 or 3, partly because their language skills are not developed sufficiently until then, said Dr. Christopher Walsh, a geneticist and neurologist at Children's Hospital who studies autism.

But there is great interest, he said, in diagnosing children earlier because intensive behavioral intervention done in the early years seems to help them later in life.

The challenge now, said Klin, is to see if doctors can tell soon after birth if a child is at risk for autism. By using the quantitative methods from the new research, he said, hopefully "we will be able to do so, even with children at only a few months of life." From The Bonston Globe

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Early autism intervention makes dollars and sense

Early autism intervention makes dollars and sense
By William Frea with Daily Breeze

Posted: 05/02/2009 07:13:13 PM PDT

With one in 150 children today diagnosed with autism, the debate rages on over what is the best treatment for this condition, and - just as importantly - who will pay for it.

In the wake of Autism Awareness Month in April, we have an opportunity to take a realistic and probing look at the most effective means for treating this developmental condition, and where resources should be placed for this treatment.

Today, beleaguered states with budget deficits, such as California, are evaluating all service programs to find ways to cut costs. States need to take a close look at what approaches deliver the best outcomes and the best return on investment. The question is not how much do autism services cost, but how much is saved by treating autism early and effectively, and how much is lost if this early intervention does not occur.

The Autism Society of America has calculated that autism costs the United States more than $90billion each year. There's no question that treatment for autism is expensive. However, there is a significant difference between autism and other severe developmental disabilities. With autism, it's been shown that with targeted early intervention using scientifically validated methods, many children can gain the skills they need to move into a mainstream classroom.

With evidence-based early interventions such as Applied Behavior Analysis, or ABA, the most widely accepted method for treating autism, as many as half of these children would no longer be on the autism spectrum, and most would go on to successful futures as independent adults.

The costs of caring for a person with autism over his or her lifetime is estimated to be at least $3.2 million, according to a study from Professor Michael Ganz at the Harvard School of Public Health. Others have pegged the cost even higher, up to $4.7 million. With ABA therapy averaging $40,000 to $70,000 a year, and most children requiring only several years of therapy starting around age 2, early intervention with this approach clearly delivers an enormous return on investment by avoiding the multi-millions required for lifetime treatment, residential housing and care.

Not included in this cost-benefit estimate is the value that a functioning adult can contribute back to society, or the joy of parents and families who recover the child they thought lost behind the veil of autism. This human benefit is truly priceless.

Unfortunately, California recently opted not to require insurance providers to cover behavioral interventions such as ABA, even though this treatment has been the gold standard for treating autism for more than 30 years. Insurance companies have taken the position that it is education-based rather than a medical treatment.

Other states disagree. Nevada is close to passing legislation requiring insurance companies to fund ABA therapies. Nevada Assemblywoman Melissa Woodbury made a compelling argument citing research that demonstrated 47 percent of children with autism were able to lead independent lives after receiving at least 30 hours per week of intensive ABA early intervention. Nevada would join Arizona, Florida, Illinois, Indiana, Louisiana, Pennsylvania, South Carolina and Texas as states that require insurance providers to cover intensive autism treatments.

We all hope researchers will soon discover the cause of the autism epidemic and how to prevent it. In the meantime, we need to deal with both today's reality and tomorrow's prognosis, as these children move on through middle school, high school and transition to adulthood and careers. The best investment that we can make today is early intervention with scientifically validated ABA therapy.

As policy makers in California struggle with tough financial choices and argue over how much support to give to autism treatments, we urge them to consider not only the dollars and cents of autism, but the dollars and sense. Funding based on the outcomes of evidence-based therapies is the prudent decision for both the short-term and the long-term interests of children with autism, their families and our society as a whole.

Dr. William Frea is chief clinical officer and co-founder of Autism Spectrum Therapies, an agency providing autism services throughout Southern California. He has served on the California State Legislative Blue Ribbon Commission on Autism.

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Ten Things Every Child With Autism Wishes You Knew

Ten Things

Every Child with Autism Wishes You Knew

by Ellen Notbohm

from the book Ten Things Every Child with Autism Wishes You Knew (2005, Future Horizons, Inc.) 

Reprinted in its entirety with permission of author

_S

ome days it seems the only predictable thing about it is the unpredictability. The only consistent attribute -- the inconsistency. There is little argument on any level but that autism is baffling, even to those who spend their lives around it. The child who lives with autism may look “normal” but his behavior can be perplexing and downright difficult.

Autism was once thought an “incurable” disorder, but that notion is crumbling in the face knowledge and understanding that is increasing even as you read this. Every day, individuals with autism are showing us that they can overcome, compensate for and otherwise manage many of autism’s most challenging characteristics. Equipping those around our children with simple understanding of autism’s most basic elements has a tremendous impact on their ability to journey towards productive, independent adulthood.

 
Autism is an extremely complex disorder but for purposes of this one article, we can distill its myriad characteristics into four fundamental areas: sensory processing challenges, speech/language delays and impairments, the elusive social interaction skills and whole child/self-esteem issues. And though these four elements may be common to many children, keep front-of-mind the fact that autism is a spectrum disorder: no two (or ten or twenty) children with autism will be completely alike. Every child will be at a different point on the spectrum. And, just as importantly – every parent, teacher and caregiver will be at a different point on the spectrum. Child or adult, each will have a unique set of needs.

Here are ten things every child with autism wishes you knew: 

1.  I am first and foremost a child. My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about.

As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don’t think I “can do it,” my natural response will be:  Why try?

2.  My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It his means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself. Here is why a “simple” trip to the grocery store may be hell for me: 

My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today’s special. Musak whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload! 

My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle 3 with ammonia….I can’t sort it all out. I am dangerously nauseated.

Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated. The fluorescent light is not only too bright, it buzzes and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing -- the space seems to be constantly changing. There’s glare from windows, too many items for me to be able to focus (I may compensate with "tunnel vision"), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can’t even tell where my body is in space.

3.  Please remember to distinguish between won’t (I choose not to) and can’t (I am not able to).  

Receptive and expressive language and vocabulary can be major challenges for me. It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, this is what I hear: “*&^%$#@, Billy.  #$%^*&^%$&*………” Instead, come speak directly to me in plain words:  “Please put your book in your desk, Billy.  It’s time to go to lunch.”  This tells me what you want me to do and what is going to happen next.  Now it is much easier for me to comply. 

4.  I am a concrete thinker.  This means I interpret language very literally.  It’s very confusing for me when you say, “Hold your horses, cowboy!” when what you really mean is “Please stop running.”  Don’t tell me something is a “piece of cake” when there is no dessert in sight and what you really mean is “this will be easy for you to do.”  When you say “Jamie really burned up the track,” I see a kid playing with matches.  Please just tell me “Jamie ran very fast.” 

Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me. 

5.  Please be patient with my limited vocabulary.  It’s hard for me to tell you what I need when I don’t know the words to describe my feelings.  I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express.  Be alert for body language, withdrawal, agitation or other signs that something is wrong. 

Or, there’s a flip side to this:  I may sound like a “little professor” or movie star, rattling off words or whole scripts well beyond my developmental age.  These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to.  They may come from books, TV, the speech of other people.  It is called “echolalia.”  I don’t necessarily understand the context or the terminology I’m using.  I just know that it gets me off the hook for coming up with a reply.

6.  Because language is so difficult for me, I am very visually oriented.  Please show me how to do something rather than just telling me.  And please be prepared to show me many times.  Lots of consistent repetition helps me learn. 

A visual schedule is extremely helpful as I move through my day.  Like your day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, helps me manage my time and meet your expectations.   

I won’t lose the need for a visual schedule as I get older, but my “level of representation” may change.  Before I can read, I need a visual schedule with photographs or simple drawings.  As I get older, a combination of words and pictures may work, and later still, just words. 

7.  Please focus and build on what I can do rather than what I can’t do. Like any other human, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need “fixing.”  Trying anything new when I am almost sure to be met with criticism, however “constructive,” becomes something to be avoided.  Look for my strengths and you will find them. There is more than one “right” way to do most things. 

8.  Please help me with social interactions. It may look like I don’t want to play with the other kids on the playground, but sometimes it’s just that I simply do not know how to start a conversation or enter a play situation.  If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I’m delighted to be included. 

I do best in structured play activities that have a clear beginning and end.  I don’t know how to “read” facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses.  For example, if I laugh when Emily falls off the slide, it’s not that I think it’s funny. It’s that I don’t know the proper response.  Teach me to say “Are you OK?”

9.  Try to identify what triggers my meltdowns.  Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you.  They occur because one or more of my senses has gone into overload.   If you can figure out why my meltdowns occur, they can be prevented.  Keep a log noting times, settings, people, activities.  A pattern may emerge.

Try to remember that all behavior is a form of communication.  It tells you, when my words cannot, how I perceive something that is happening in my environment. 

Parents, keep in mind as well:  persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders and gastrointestinal problems can all have profound effects on behavior.

10.  Love me unconditionally.  Banish thoughts like, “If he would just……” and “Why can’t she…..”  You did not fulfill every last expectation your parents had for you and you wouldn’t like being constantly reminded of it.  I did not choose to have autism.  But remember that it is happening to me, not you.  Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you – I am worth it. 

And finally, three words:  Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I’m not good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won’t be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh. 

They may have had autism too. 

The answer to Alzheimer’s, the enigma of extraterrestrial life -- what future achievements from today’s children with autism, children like me, lie ahead? 

All that I might become won’t happen without you as my foundation. Be my advocate, be my friend, and we’ll see just how far I can go.

© 2005, 2009 Ellen Notbohm


 

Please contact the author for permission to reproduce in any way, including re-posting on the Internet.

Ellen Notbohm is author of Ten Things Every Child with Autism Wishes You Knew, Ten Things Your Student with Autism Wishes You Knew, and  The Autism Trail Guide: Postcards from the Road Less Traveled, all ForeWord  Book of the Year finalists. She is also co-author of the award-winning 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders, a columnist for Autism Asperger’s Digest and Children’s Voice, and a contributor to numerous publications and websites around the world. To contact Ellen or explore her work, please visit www.ellennotbohm.com .

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ShoeboxTasks: Learning How to Learn

A structured approach to learning using ShoeboxTasks contributes to successful educational beginnings; for children with Autism who are taking their first steps toward greater independence and a life of learning.




Learning How to Learn



Visit the Vocational Workshop where ShoeboxTasks are manufactured, assembled and packaged, focusing on the "Independent Work System."


ShoeboxTasks Part 1


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Visit the workshop where ShoeboxTasks are manufactured. Take a look at making the abstract more concrete through individualizes visual instruction, establishing routines and the concept of "First work, then Play".


ShoeboxTasks Part 2

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