I wish

There are many things I wish for.. I wish that Scientist and doctors had more of a knowledge and could answer more questions about Autism and other disorders on the spectrum. Not what is happening with DSM-5 proposal to eliminate all other disorders's on the spectrum and just keep treating and diagnosing the very classic Autistic children and adults. I would wish for a cure for Autism or at least a treatment. I would wish for an end and cure to Childhood Cancer. I would wish for an end to child abuse, sexual abuse, and domestic violence. I would wish for an end to end the suffering of our troops and their families. For all their sacrifice that is the last thing they should have to do is suffer through whatever ail's them. Homelessness, Mental Illness, Suicide, Loss of Limb, PTSD, etc...I would wish for more peace, understanding and compassion in the world.

I don't know if I could honestly say that if I had one wish I would wish anything above would actually happen. I would have to say if I had one wish that I would be tempted to wish that Mackenzie would have never left my side that he would have never had to suffer through the loss of a parent (or both parents). I would wish Mackenzie home. I would wish that if I could I would wish I could bring him home. Its terribly selfish but it is what it is.

saw on cafemom

Autism Moms Have Stress Similar To Combat Soldiers

By Michelle Diament

November 10, 2009 Text Size  A  A

Mothers of adolescents and adults with autism experience chronic stress comparable to combat soldiers and struggle with frequent fatigue and work interruptions, new research finds. These moms also spend significantly more time caregiving than moms of those without disabilities.

Researchers followed a group of moms of adolescents and adults with autism for eight days in a row. Moms were interviewed at the end of each day about their experiences and on four of the days researchers measured the moms’ hormone levels to assess their stress.

They found that a hormone associated with stress was extremely low, consistent with people experiencing chronic stress such as soldiers in combat, the researchers report in one of two studies published in the Journal of Autism and Developmental Disorders.

“This is the physiological residue of daily stress,” says Marsha Mailick Seltzer, a researcher at the University of Wisconsin-Madison who authored the studies. “The mothers of children with high levels of behavior problems have the most pronounced physiological profile of chronic stress, but the long-term effect on their physical health is not yet known.”

Such hormone levels have been associated with chronic health problems and can affect glucose regulation, immune functioning and mental activity, researchers say.

In a companion study, the researchers followed up with the same group of mothers daily to interview them about how they used their time, their level of fatigue, what leisure activities they participated in and whether or not stressful events occurred. This information was then compared with data from a national sample of mothers whose children do not have disabilities.

Mothers of those with autism reported spending at least two hours more each day caregiving than mothers of children without disabilities. On any given day these moms were also twice as likely to be tired and three times as likely to have experienced a stressful event.

What’s more, these moms were interrupted at work on one out of every four days compared to less than one in 10 days for other moms.

Despite all of this, mothers of an individual with autism were just as likely to have positive experiences each day, volunteer or support their peers as those whose children have no developmental disability, researchers found.

“On a day-to-day basis, the mothers in our study experience more stressful events and have less time for themselves compared to the average American mother,” says Leann Smith, a developmental psychologist at the University of Wisconsin-Madison who worked on the studies. “We need to find more ways to be supportive of these families.”

In particular, the researchers say that parents need better respite options and flexibility from their employers. Further, they say, programs to help manage behavior problems can go a long way toward improving the situation for mothers and their kids alike.

Autism and Dr Oz

I have been reading studies, articles and reading pretty much I an get my hands on. I am a strong believer in NOT trusting the word of doctors. I mean if the doctor says remove your left foot it looks like it can kill you... I wouldn't be the first one lined up to do it! ESPECIALLY when it comes to my children. ULTIMATELY I am the only one responsible for my children (okay Rick has some responsibility whatever hasn't been brain washed lol) So for those of my readers who caught Dr Oz the other day when he was talking about the Autism topic. He invited Dr Bob Sears (Son of the Famous Pediatrician)and Autism Speaks... Amongst other "experts", scientists, and Pediatricians. Autism Speaks refused the invite saying they are glad to discuss the topic from diagnosis and on... not the cause.... I think Autism Speaks doesn't want to get into the DEBATE if they are unbiased.

The on going debate whether there is a connection to Autism Spectrum Disorder (Classic Autism, Asperger's Syndrome aka High Functioning Autism, Persuasive Development Disorder_ Not other specified, Childhood Disintegrative Disorder, and Rett Syndrome) and Vaccines. I know people who believe both sides. I think from what I have read I believe its part of our genetic make up TRIGGERED by possibly something environmental (Vaccines, Pollution, Diet, Drugs, Pesticides, etc) and it clearly has a genetic link. Hopefully soon we can better isolate and study the DNA from this and learn more about it. Its an Epidemic and if it was a contagious disease or something like Cancer we would have the funding for this. Truth is Rett Syndrome is Deadly... Only girls survive outside of the womb and they mostly don't live to adulthood.
The original theory was the mercury based ingredient in MMR was causing the Autism but since the MMR shot started being given there hasn't been a change. Also they took out the ingredient BUT they left in Aluminum (which by the way is a factor in Alzheimer’s disease. So it still remains a debate and a theory. Because symptoms of a normally developing child grow from productive to basically regressive and silent after the MMR or two year mark. (My son was recommended to have the MMR shot at a year old which I declined)

If you ask me what I think of Vaccines.. Peds are probably right the benefits out weigh the risk for SOME! If I still had epilepsy then my children wouldn't have to be vaccinated and there would be NO argument. So why isn't it the same when older sibling(s) have Autism? Why can't doctors just call it like it is... The benefits outweigh the risks there are continual studies on the subject of vaccines and all risk factors including Autism Spectrum Disorders. Like I said before I freely admit to it. Why? Because I see pharmaceutical people in suits with their briefcases on wheels going to the doctors about as much as I do... dishing out their samples, selling their products and leaving their reminders they were there (ever see a prescription sheet, a neat pin, a magazine cover??? notice the ad? )You don't think doctors can't be pressured by this money? Most of the Autism studies are funded by pharmaceuticals umm conflict of interest much? I have to wonder I mean honestly doctors aren't evil but they do have bills to pay and student loans to pay off... We all do... So they don't know what causes Autism so how can they say that 100% its not Vaccines. I dunno don't hate me but I have to believe some doctors or scientists and others are out there just to line their pockets....

Someone I know son was suspected of having Aspergers and was tested and cleared but told to return when he started puberty. Also James was normal developing & functioning with the exception of not being social and having depression. He wasn't diagnosed until 19. The testing completed at 22. So a theory of mine some forms or triggers can happen later perhaps by hormones or puberty? Maybe?
Dr Oz stated his second theory is environmental which they said was anything but genetic. They are showing an increase of people who lived within a quarter of a mile from a freeway during the entire pregnancy. So that is a possible cause. The same scientist that made that statement said everyone wants that ONE smoking gun and she fully believes its not ONE gun it could be a mine field of things. I say it again... I believe with my heart that we have a genetic make up and when in our life we have triggers or conditions in our lifestyle etc... that can bring on the onset of ASD.
The third was age... mother or fathers age... For moms 30% and Dads is 20% The age of 25 or older. I asked these questions. I was born with birth defects and it has always been a concern of mine. I was told as a teenager it SHOULD be a concern when conceiving children. The PCM said nooo there is no connection between Rick's age and anything that could go wrong. Then the OB-Gyn basically told me that my birth defects are caused by Environmental factors and that if it were to happen to my offspring it would be random and coincidence. That I was no longer high risk because of my birth defects but high risk because James has Aspergers. It confused both of us and now I understand. In the end it probably wouldn't have changed our INFORMED decision to conceive William. There is no genetic testing available for Autism.

The stats went from 1 in 5000 to 1 in 100 up to 110 depending on where you are. Why? Could it be that the condition is more recognizable? We understand it better? I know when I was in Middle School everyone and their brother had ADD or ADHD.... EVEN ME! But I don't have Attention Deficit Disorder or Attention Deficit hyperactivity disorder. So maybe there could be an over diagnosis? Could it be we have better resources for testing and definitions? Or is it something changing (potentially getting worse killing disabling our future... our children?)

With that said there is no reason with early intervention, diagnosis and a good pediatric doctor that the person with Aspergers (and other diagnosis on the Autism spectrum) cannot function with coping mechanisms and appear to be fairly normal, productive, intelligent, successful future and be productive members of society! I expect this out of James. He MAY have had a late diagnosis. He may have had some delays in treatment but I KNOW he will eventually be just like the rest of us with a twist only James can give LOL. There is no CURE but there is no reason for not COPING. If there is a way to COPE there is plenty of HOPE!

What are your thoughts?

Want to catch the episode? Watch it here http://www.doctoroz.com/videos?tid=32&tid_1=168

Research Points to Genetic Link in Autism

Research Points to Genetic Link in Autism
Scientists Unlock Groundbreaking Clues in Understanding Genetics of Autism
By JOHN DONVAN and CAREN ZUCKER
April 28, 2009—


Scientists have long known that people with autism have brains that work differently -- their brain activity doesn't follow the usual pathways for speech, thought or social interaction. Still, the lingering question has always been: why?

New research published in the online medical journal Nature today offers the best evidence yet that a major part of the answer is genetics.

For the first time, scientists have identified specific genetic mutations that lead to specific abnormalities in how brain cells communicate and carry messages in the brains of those with autism.

"The genes that were discovered appear to be involved in the development of the frontal lobe of the brain ... that is, involved in complex behavior such as social behavior and also abstract thought," said Dr. Geri Dawson, chief officer of Autism Speaks and co-author of the study. "So it helps us understand why people with autism have difficulty in the area of social interaction -- and also why they have a tendency to be so concrete and literal in their interpretation."

Autism, a neurodevelopmental disorder that impairs social interaction, communication and behavior, tends to run in families. According to the National Institutes of Health, families with one autistic child have a one in five chance of having a second child with the disorder.

Scientists have long suspected a genetic underpinning for autism, but have had difficulty finding the link. Previous studies in families with identical twins have found that when one twin has autism, the odds are relatively strong that the other will too.

But the latest research -- one of the largest studies to date -- goes beyond twin studies, using cutting edge technology to examine and compare the DNA from more than 12,000 individuals affected by autism. Scientists pooled data together to gather a sample large enough.

Click Here to Visit the ABCNews.com OnCall+ Autism Center and Get Answers From Top Autism Experts.



Research Holds Promise for Future Cure
Erica Romano of Brooklyn, N.Y., volunteered her family for the study. As a mother of two sons with autism, Romano has strong convictions that autism involves genes.

"I have a third cousin who has Aspergers and a first cousin who has PDD/autism," she told ABC News. "I'm really hoping that this study sheds some light on the genetic factor."

By comparing the DNA of those with and without autism, researchers were able to identify several genes related to autism. Scientists say that autism, a complex disorder, could be caused by as many as 50 genes.

The findings point researchers in the right direction toward developing drugs to treat the disorder.

"What we're discovering in this study is that these genes appear to be affecting similar biochemical pathways in the brain, and so then, if we can develop drugs that can help to repair or restore that pathway, this eventually could be extremely helpful as a treatment," said Dawson.

For parents like Romano, the studies hold promise to change the destiny of those with autism by finding a cure. While it won't come overnight, this research opens the door to understanding the genetic mysteries of autism.

"There are so many steps down the road before we can develop these medications," Dawson said. "But this is the first step -- and without this step, we would never get there."




Copyright © 2009 ABC News Internet Ventures

Inside the mind of a child with autism

Inside the mind of a child with autism

Posted by Lylah M. Alphonse April 16, 2009 02:43 PM
The US Centers for Disease Control and Prevention estimates that 1 out of 150 kids have autism, an increase from previous estimates. With autism now more common than pediatric cancer, diabetes, and AIDS combined, if your child isn't on the autism spectrum, chances are good that he or she knows (or will eventually know) someone who is.

April is National Autism Awareness month. We've discussed autism in general and resources for children and adults with ASD, but how do you help your child interact or socialize with someone on the spectrum?

Start by shattering the Rainman myth: Autism may be characterized by varying degrees of impaired social interaction or communication, but a little insight can go a long way toward making social situations easier. For example: "Birthday parties are an ideal way to introduce an autistic kid and his parents to your home," Paul Collins writes in Cookie Magazine, where he offers tips on hosting an child with autism. "They're the stuff he finds logical: presents, cake, things to climb on. What's not to get?"

Ellen Notbohm is the 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.

The mother of a child with autism and another with ADHD, Notbohm's books provide an enlightening glimpse into the minds of children on the spectrum, and have been an eye-opener for many people who are coping with a new ASD diagnosis or wondering how to interact with a child with autism. This excerpt is from Ten Things Every Child with Autism Wishes You Knew and is posted here with permission from the author (please contact her for permission to reproduce in any way, including re-posting on the Internet).

Ten Things Every Child with Autism Wishes You Knew
By Ellen Notbohm

Some 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 Ellen Notbohm.To contact Ellen or explore her work, please visit http://www.ellennotbohm.com.



Lylah M. Alphonse is a Globe staff member and mom and stepmom to five kids. She writes about juggling career and parenthood at The 36-Hour Day and blogs at Write. Edit. Repeat. E-mail her at lalphonse@globe.com.

Autism Awareness

We've run into a new conflict with James. I have been very Autism "Aware" since Kristin and Ryan came into my life and have had it in my life before them. I started to absorb and learn. Why? I don't know why? My love for learning new things, I read things to understand them instead of turning the ignorant cheek. Slowly more children with PDD, High Functioning Autism or Aspbergers, and even one friend of my sisters who has an 8 year old son who was diagnosed at the age of three with Aspbergers but as he got older he started to develop more severe symptoms that was more signs of classic Autism. I remember one event where Chase was so lost and I felt as frustrated and lost as he did and very helpless. Most of the children in my life with ASD have been boys but one was a girl and she grew up next door to me. Those of you who've known me for the life of Bella's mommy Chat remember the issues I had with my first husband. Have to say I have never seen the light in his eyes like when he was a teacher for Aspbergers. These are the memories I have about Aspbergers.. When James my step son came into my life I was told he MAY have BiPolar. His mother said more so than his father. Soon after Rick and I got married James stopped taking his medications for Bipolar. Yet no symptoms of bipolar persisted through some HELLISH times dealing with two deployments between Rick and Rick's oldest son Alex. James had more break downs than bipolar symptoms. Which made me suspect Aspbergers... I asked his parents about his development and neither parent remembered anything significant. I know James didn't want to be branded with Bipolar but his biological mom never stopped with this and often brought it up. Toward the end of the deployment I knew that Rick and I needed help for James. 21 years old with little to no life skills. What he did know I helped teach him. I taught him how to cope. I pressured him into a job. So I decided all my hard work wasn't going to waste. I was going to sign up for Family therapy. So when Rick rejoined the family. I would already have programs in place to help if there was any PTSD symptoms, and as normal most Soldiers have issues rejoining a family and finding their place in the things that had developed since they were gone. I KNEW this would be a major problem for Rick. Within three appointments the therapist already suspected James of Aspbergers and brought it up to me. I jumped right on her band wagon. It took another session to let James know we were branding him with a new diagnosis and what the new diagnosis meant. Unfortunately James still doesn't like to be branded even with what I see as a BETTER diagnosis. He thinks having Aspbergers means your slower or dumber. I have tried to take this idea out of his head but he won't even talk about Aspbergers outside of therapy. April is Aspberger Awareness month and a lot of people have approached me lately about what Autism is. They are surprised as I am about the lack of knowledge with Autism that they have. At the end of March I was on the search for autism Awareness graphics for actually my graphics site and to make things for Myspace. Rick has to write a paper for school about something that effects him. Medical was one of his options. Since he has a lack of knowledge as do many people around me have about James condition. This really upsets James since he doesn't want to know about autism. He doesn't want to cope with Aspbergers. He doesn't want anything to do with it. This is a foreign concept to me. With every surgery I have had which is ALOT, with every diagnosis I have had I submerge myself in research and learn about it so its not foreign thing someone just put on my back. Its a way to see if the diagnosis really does match me, if the treatment is fitting or if there is something I can do differently, etc. I have done this since I was 12 years old. Can you learn to cope and help yourself with this condition without wanting to deal with the fact you have it in the first place? I haven't found a abundance of knowledge about support for Parents or those who are adults living with Aspbergers. Rick found this awesome workbook I think the worksheets can help James and us out a lot if he was willing. http://www.amazon.com/exec/obidos/search-handle-URL/ref=ntt_athr_dp_Sr_1?%5Fencoding=UTF8&search-type=ss&index=books&field-author=Ellen%20S.%20Heller%20Korin
I am proud of Rick for his willingness to learn and help James cope with his condition. He admittedly wants to learn more especially since we are faced with the chances of the new baby having Autism too.

Grandfather builds Web browser for autistic boy

By BRIAN BERGSTEIN, AP Technology Writer Tue Jun 3, 1:54 PM ET

John LeSieur is in the software business, so he took particular interest when computers seemed mostly useless to his 6-year-old grandson, Zackary. The boy has autism, and the whirlwind of options presented by PCs so confounded him that he threw the mouse in frustration.

LeSieur tried to find online tools that could guide autistic children around the Web, but he couldn't find anything satisfactory. So he had one built, named it the Zac Browser For Autistic Children in honor of his grandson, and is making it available to anyone for free.

LeSieur's quest is a reminder that while the Web has created important communication and educational opportunities for some people with cognitive impairments, computers can also introduce new headaches for families trying to navigate the contours of disability.

The Zac Browser greatly simplifies the experience of using a computer. It seals off most Web sites from view, to block violent, sexual or otherwise adult-themed material. Instead it presents a hand-picked slate of choices from free, public Web sites, with an emphasis on educational games, music, videos and visually entertaining images, like a virtual aquarium.

Other programs for children already offer that "walled garden" approach to the Web. But LeSieur's browser aims to go further: It essentially takes over the computer and reduces the controls available for children like Zackary, who finds too many choices overwhelming.

For example, the Zac Browser disables extraneous keyboard buttons like "Print Screen" and turns off the right button on the mouse. That eliminates commands most children don't need anyway, and it reduces the chance an autistic child will lose confidence after making a counterproductive click.

Children using the Zac Browser select activities by clicking on bigger-than-normal icons, like a soccer ball for games and a stack of books for "stories." The Zac Browser also configures the view so no advertisements or other flashing distractions appear.

"We're trying to avoid aggressive or very dark or complicated Web sites, because it's all about self-esteem," LeSieur said from Las Vegas, where he lives. "If they're not under control, they will get easily frustrated."

Autism generally affects a person's ability to communicate, and Zackary doesn't speak much. But his mother, Emmanuelle Villeneuve, reports that the boy can start the Zac Browser himself. He enjoys listening to music through the program and trying puzzles — things he always liked before but hadn't been able to explore online, she said from her family's home in suburban Montreal.

Perhaps most tellingly, while he still acts out aggressively against the TV, she said, he doesn't try to harm the computer.

LeSieur didn't create the browser by consulting with people who are considered experts in disorders on the autism spectrum. The small software company he runs, People CD Inc., essentially designed the Zac Browser to meet Zackary's needs, and figured that the approach would likely help other autistic children. Early reviews have been positive, though LeSieur plans to tweak the program so parents can suggest new content to add.

Several autism experts were pleased to hear of LeSieur's work, and not surprised that he had not previously found anything suitable for Zackary.

After all, the autism spectrum is so wide that a particular pattern of abilities or impairments experienced by one autistic person might be reversed in another. In other words, creating software that would work for huge swaths of autistic children is a tall order.

Indeed, the Zac Browser might do nothing for another autistic child.

That said, however, LeSieur's approach of limiting distractions and using the software as a confidence-boosting tool "is a very good idea," said Dianne Zager, director of the Center for Teaching and Research in Autism at Pace University. She said many autistic students tend to do best with educational materials that make unnecessary stimuli fade from view.

"Some parts of the Web have so much extraneous material that it can be distracting, and for the nonverbal child, there might not be an ability to negotiate that information," added Stephen Sheinkopf, an autism researcher at Brown University.

This is not to say the Web is necessarily barren for autistic children. James Ball, an autism-education consultant in New Jersey, said many children he works with enjoy Webkinz, where kids care for virtual pets. Others find chat rooms and instant-messaging a lower-anxiety way of socializing than talking to someone in person, he said.

But the Zac Browser might turn out to be the rare tool that can be configured to strike a chord with a wide range of autistic students, said Chris Vacek, chief innovation officer at Heartspring, a special-education center in Wichita, Kan. Vacek is considering using the Zac Browser at Heartspring.

One huge advantage is that the browser is free, while many assistive technologies cost upward of $5,000 and work only on specialized devices. But Vacek, himself a parent of an autistic child, said the Zac Browser's best credential is that it appears to pass what he calls Heartspring's "acid test": It has a high chance of increasing a child's ability to do things independently.

"Let's hear it for grassroots innovation," Vacek said.

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On the Net:

The Zac Browser can be downloaded or run directly from

http://www.zacbrowser.com