The Ingenious Mind of John E. Robison

Last week, the Science Channel (a division of Discovery) aired an episode of "Ingenious Minds" and took a closer look at the life and mind of John E. Robison. The show gave a fascinating glimpse into Robison’s trials and triumphs growing up with both Savant Syndrome and Asperger’s Syndrome.

At the age of 16, Robison dropped out of high school and pursued a career in engineering, where he excelled in many areas, despite his lack of a formal education. Robison didn’t require schooling because his mind can quickly master subjects that take neurotypical individuals years to learn. However, in exchange for those technical gifts, he has suffered from crippling social skills, which severely inhibited his ability to fit in both as a child and as an adult.

In his early years, Robison racked up an incredible resume that included work in the areas of sound technology, special effects, toys, nuclear testing devices and medical lasers.

Robison is yet another example of a long list of individuals with autism that have greatly contributed to our world through their unique gifts. For the most part, he has overcome many of his earlier challenges and is now a New York Times best-selling author, speaker and autism advocate.

If you missed "Ingenious Minds" on the Science Channel last week, you can view the episode in its entirety below.

PART I

PART II

James Durbin Voted into the Top 13 on American Idol

Fox / 19 Entertainment

In a tense moment Thursday evening on live television, James Durbin was placed on stage in front of millions of viewers, pitted against his Hollywood roommate, Stefano Langone, for a spot in American Idol’s "Top 13." Host Ryan Seacrest eventually delivered the news to Durbin, that he earned a position in the elite group that will move on to compete next week. 

The decision by viewers, who cast over 40 million votes, has placed Durbin in an excellent position to vie for the coveted crown to be the next American Idol. However, it was bittersweet for Durbin, who was clearly elated about his advancement, but saddened for his good friend, Stefano, who was sent back to the elimination stools. Although visibly nervous on stage, there was little doubt about Durbin’s moving on, even before his name was called.

James Durbin has become a fan favorite, particularly among those in the autism and special needs communities. At an early age, Durbin was diagnosed with a comorbid condition that includes both Tourette’s and Asperger’s Syndromes. In addition to Durbin’s challenges, he lost his father at the age of nine due to a drug overdose. He is also currently unemployed, with a young child at home and even noted that before his appearance on ‘Idol,’ it was often difficult to purchase diapers for his youngster.

By the end of the show, Durbin learned that his good friend, Stefano, earned a spot as a "wild card" contestant.

As Ryan Seacrest and the other judges noted, it was one of the most difficult nights in the history of American Idol. And indeed, there were some contestants who were sent home tonight that could have won the entire competition in previous years. Because of this fact, Durbin’s accomplishments are all-the-more-significant.

James has also become an emblem of hope for parents of children with high-functioning autism and other special needs, proving that despite physical or emotional challenges that exist in one’s life, they can be overcome.

New Tool Allows Children with Autism to Express Emotions

As parents of children with autism, we are always searching for useful ways to help our kids communicate their thoughts and feelings, and thereby achieve greater self-regulation. How many spectacular meltdowns could be averted if a child was capable of properly conveying a powerful inner feeling in lieu of kicking or screaming?

With self-awareness, viable alternatives to destructive and repetitive behavior become accessible and grievous misunderstandings a child encounters with adults and other students at school would be diminished. Teetering connections could become new friendships when a child is able to engage in communication towards those beyond family members. 

Asperger’s Syndrome expert Dr. Tony Attwood has long seen Cognitive Behavior Therapy (CBT) as an excellent tool for helping children with autism come to terms with their condition. CBT maintains that self-awareness of thoughts and emotions and how they affect a person lead to greater command of situations that would normally be overwhelming. 

Previously, Dr. Attwood has published workbooks for children on the autism spectrum to help them learn about their feelings and developed a “toolbox” of strategies for dealing with them. I remember going through such a workbook for anxiety with my son a while back. He ranked stressful situations on a visual thermometer, thought about how his body reacted to them, then came up with his own self-calming strategies. This exercise actually lead me to having new accommodations written into his IEP. Because he was the one that came up with them, they proved very effective.

Now, Dr. Attwood, in conjunction with Dr. Kirsten Callesen and Dr. Annette Moller Nielsen of Denmark, have created a Cognitive Affective Training (CAT) kit designed to help children and young adults with developmental disabilities communicate with adults and one another. Essentially, he has taken his workbook and has made it three dimensional, making it more engaging to use and share. 

Appropriate for all ages, the CAT-kit was years in the making and has now proven to be effective as an easy, hands-on program designed to promote awareness of how thoughts, feelings and actions intersect. Through the process of using various visual components, children and adults have the opportunity to understand their emotions and share newfound awareness with each other.

The CAT-kit’s website describes some of the product’s benefits:

Therapists and other professionals consider the CAT-kit an easy, hands-on adaptation of the cognitive-behavioral strategies they are already familiar with. The kit allows professionals to obtain valuable information regarding the thoughts and feelings that exist behind students’ behaviors, while providing a non-stressful environment where professionals can work on students’ self-awareness and self-control. The CAT-kit elements can easily be integrated into comprehensive CBT programs.

I plan to ask my son’s special education teacher to acquire this kit for his classroom as part of an ongoing campaign to improve his school life and will report back on its effectiveness.


Does James Durbin Really Have Autism?

Fox / 19 Entertainment

James Durbin delivered another knockout performance tonight on American Idol, which included a rendition of Judas Priest’s “You’ve Got Another Thing Coming." His vocal range was once again impressive and other than some competition from Casey Abrams and Jacob Lusk, Durbin clearly outshined all of the other male contestants.  

As Durbin continues to press forward to the coveted American Idol "Top 13," the blogosphere has been buzzing in recent weeks about his similarities to last year’s runner up, Adam Lambert, his Tourrette’s Syndrome and his Asperger’s. Included in this chatter is speculation by some that Durbin may not be autistic at all and is only using his "autism" as a way to garner sympathy votes from both judges and viewers.

Even on our own site last week, in another story on Durbin, several comments were posted by someone using the handle "starsky299" that included the following:

"He will get pity votes for his Tourrett’s (sic), and that’s ok because lots of idols get pity votes, and he’s a good singer. But he shouldn’t get pity votes for autism when he really isn’t autistic. If he is, he has such a mild case of it, he’s practically normal. His facial twitches which got him teased isn’t normal… But that’s not the same thing as autism. People will say there are similarities and links to autism which is true, but he’s so high functioning it’s a non issue. I mean, the guy can do more than I can do and I’m not even autistic."

As someone who has a child with high functioning autism, it was very difficult not to be upset at the ignorance of such statements. First of all, it is unwise and irresponsible to question someone’s condition based on what is seen by a few minutes of television time. To compound matters, all episodes of American Idol so far have been taped, meaning producers have been able to cherry pick and edit unflattering characteristics that Durbin may have shown so far.

Aside from that is the bigger issue of what people think autism really is. Children on the higher end of the spectrum struggle with these issues on a daily basis and it takes a high profile person such as James Durbin to expose the misconceptions that currently exist among the general population.

Because of stereotypes and lack of awareness, autism is still a very confusing and misunderstood disorder, even for those related to someone on the autism spectrum. Later on, Starsky299 mentioned that his brother has "classic" autism, noting the following:

"My brother is truly, classically autistic and it truly holds him back. He can not cross the street without help because he can’t understand how traffic works."

While we certainly feel for starsky’s brother, he should not be defined by what holds him back. He should be defined by what he is capable of, including his unique gifts, abilities and personality. 

There are many people with Asperger’s Syndrome who are not diagnosed until adulthood and there are even some with moderate-to-severe autism who have not been properly screened or diagnosed. Autism is truly a "spectrum disorder" and not mutually exclusive to lower functioning individuals, nor is it reserved for those on the higher end of the spectrum. We are all part of the same family — it just happens that those who are affected experience the world in varying degrees, some more extreme than others.

As someone once told me, having autism is like being in a hurricane. Some happen to get the ferocious winds of an eye-wall, while others may only experience the feeder bands of the outer part of the storm. This does not change the fact that we all have been hit by a hurricane.

Certainly, we do not want to marginalize the challenges of those on the lower end of the spectrum as some cases are truly heart wrenching, but the truth is, having an autism spectrum disorder poses major challenges for all of those who are affected.

Hopefully, as awareness increases, more people will come to better understand those difficulties and eventually come to appreciate what James Durbin has been able to accomplish, which includes overcoming many challenges and obstacles to get where he is today.

Pokemon Creator Draws Creativity from Autism

Courtesy: Pokemon.com / Miki Tanaka

Whenever I feel nostalgic about my sons’ early years, Pokemon is always a large part of those memories. I can still see my one son, a vision of yellow, dressed as Pikachu for Halloween, or the excitement in his and his brother’s eyes when they each dug a pack of Pokemon cards from the toe of their Christmas stockings. The cards provided some of their few happy playground experiences interacting with their neurotypical peers due to the fact that all children shared the universal language of Pokemon. 

I recently discovered that like my sons, the creator of Pokemon is on the high functioning end of the autism spectrum. Long thought to have Asperger’s Syndrome, Mr. Satoshi Tajiri has confirmed this information, yet does not speak of his condition in public. This reclusive and eccentric man, who is known to work twenty-four hours at a time, spawned the gaming phenomenon that took the world by storm through his special interest in insects. 

Growing up in rural Japan, Satoshi was obsessed with insects — to the point where he was dubbed “Dr. Bug” by other children. He spent every spare moment studying and collecting them, but when he realized that some of them kill each other in captivity, he let them go. 

Soon, the rice paddies and woods of his hometown became apartment buildings and shopping centers and his local fishing pond was replaced by an arcade center. In reaction, his interests shifted to anime and video games. He became a passionate player of Donkey Kong, even starting his own business as a teenager who published tips and shortcuts to the game. He dropped out of high school, but later enrolled in a technical college.

His first original game was something he did entirely on his own, starting by dismantling a Nintendo system to see how it worked. At the age of sixteen, he won a Sega contest for best new game idea. He spent the next two years learning programming and the third year producing his first game, Quinty.

By then, the Nintendo Game Boy had hit the market and the idea for Pokemon was hatched. Sparked by his lost love of insects, he wanted to reawaken an awareness of nature in urbanized youth. Gameboy seemed the perfect medium. The communication aspect of Game Boy profoundly touched Mr. Tajiri and the fact that it had a communication cable lead him to realize that actual living organisms could move back and forth across the cable. At that time, the cable was only used for players to compete against one another, but he wanted to design a game that also involved interactive communication. He envisioned the competitive aspect of Pokemon as being ritualistic and respectful, like two Karate champions or sumo wrestlers.

Mr. Tajiri, now in his forties, eschews the current violence of video games and describes this is as a cultural norm in Japan as well. He wanted to have his characters faint instead of die, because he believes children should “respect death." When asked about having monsters in a children’s game, he uses the analogy of a horse who is dangerous if he gallops over you, but a useful friend if you are riding him. He added, “What’s more important is that the monsters are controllable by the players. It could be the monster within yourself, fear or anger, for example. And they are put in capsules." 

As for children who spend too much time playing video games, he explained that in Japan, children attend school much more than their American counterparts and only have time to play video games in small increments. 

Interestingly, he observed that in Japan, the popular Pokemon “Pikachu” products are sold alone, but in the United States, there are more products with Pikachu and and his human Ash together. He believes Americans actually understand Pokemon more than the Japanese do because they comprehend the necessity of the human aspect.

And if you’re wondering where Pikachu and all the other names for the monsters come from, they each have a real and specific meaning. 

Take Pikachu. ‘Pika’ is the Japanese sound for an electric spark, and ‘chu’ is the sound a mouse makes. So Pikachu is like an electric mouse. And “Poliwhirl” is reminiscent of a tadpole. 

Recalling his childhood field observations, Satoshi explained that there are little whirls on Poliwhirl because when you pick up a tadpole, you can see its intestines.

Once again, we discover that the world is a richer place because of the fascinating contributions made by individuals on the autism spectrum. The fact that Satoshi Tajiri, who was both socially and emotionally challenged by his disorder, could bring such joy to so many children is both heartwarming and inspiring.

20,000 Turn Out for Autism Walk in Miami

Courtesy: DoralFamilyJournal.net

Yesterday, the Miami-Dade Chapter of Autism Speaks held its annual autism walk at JC Bermudez Park in the City of Doral, a suburb of Miami, Florida. The event, which was originally planned for Key Biscayne’s Crandon Park, was moved after Doral officials granted event organizers a special permit to hold the walk. 

“The turnout was phenomenal and it brought me to tears,” said Lula Folgosa, executive director of Autism Speaks, Miami-Dade Chapter. “This was not just a walk for autism, but it was also a walk for hope and a great way to bring autism awareness to our community," she added.

According to police estimates, approximately 20,000-22,000 turned out for the event, which included Miami-Dade County Mayor Carlos Alvarez and Autism Speaks founders Bob and Suzanne Wright.

Also in attendance were dozens of vendors, all providing information and resources for families, friends and caregivers of those affected by autism.

Daniela Foley is the mother of a four-year-old child with autism and attended the event with over 100 team members, consisting mostly of friends and family. She too, was impressed by the turnout.

“When you see a crowd like that come together for a common cause, it really renews your faith in the good things about people,” she said.

Foley and her team raised approximately $10,000 and attended the walk as a way to support Autism Speaks, who she said played an integral role in helping her after her son’s diagnosis.

Through a Google search, she came across the Autism Speaks Web site and received the “100 Day Kit,” an informational guide that helps families of newly diagnosed individuals.

“Had I not come across that kit, I would have been lost,” Foley said.

Her team helped contribute to the estimated $700,000 that was raised from yesterday’s walk, which will be applied to research, awareness, advocacy and family services.

Autism Speaks will be holding a similar rally next week in West Palm Beach and also plans walks for many other cities around the country in the coming months.

For more information on Walk Now for Autism Speaks, visit http://www.walknowforautismspeaks.org/ .

Despite Setbacks, Autism-Vaccine Research Continues

Courtesy: Thoughful House Center for Children

The recent Supreme Court ruling shielding pharmaceutical companies from vaccine injury liability is a devastating blow for countless families who have fought many years attempting to link their children’s autism to vaccinations. While the decision was entirely predictable, it should be emphasized that much more research is still needed before vaccine manufacturers get a free pass and we completely shut the door on the autism-vaccine debate. 

Additionally, the disgracing of Andrew Wakefield is purported to have ended the controversy once and for all, but it has only served as a distraction from the fact that previous studies have primarily focused on the safety of individual vaccines, not on the interaction between the vaccines and their synergistic possibilities, particularly in vulnerable scenarios such as premature births or low birth weight.

Fortunately, such research is currently ongoing, undertaken by the Thoughtful House Center for Children in Austin, Texas, a non-profit organization dedicated to helping children with developmental disabilities. While Dr. Wakefield at one point contributed to the study, he resigned from the center in February, 2010.

Led by Dr. Laura Hewitson, A primate model of gut, immune, and central nervous system interaction in response to childhood vaccines began in 2002 as a 5-year collaborative study with researchers at the University of Pittsburgh to assess the role of childhood vaccinations in regressive autism. Using the Rhesus Macaque (Rhesus Monkey) as the most appropriate non-human primate model, researchers explored the neurodevelopmental, gastrointestinal and immunologic effects of combined infant vaccine regimens. This model was able to uniquely provide insights into disease mechanisms and causes, with the ability of being transferred to subsequent studies on treatment and prevention.

Because of the success of the pilot study, the second phase is already in progress. Working in collaboration with The University of Washington in Seattle, researchers are honing in on which vaccines or vaccine combinations result in behavioral and gastrointestinal impairments in infant male monkeys to try and identify any synergistic effects. The projected completion of the study is sometime in 2012.

Here are the results of the Phase One study:

Delayed acquisition of neonatal reflexes in newborn primates receiving a thimerosal-containing hepatitis B vaccine: influence of gestational age and birth weight

Influence of pediatric vaccines on amygdala growth and opioid ligand binding in rhesus macaque infants: A pilot study

Thoughtful House is to be commended for advancing our knowledge of vaccines with the end-goal of making them safer. Dr. Wakefield’s previous involvement should have no bearing on the outcome and in fact, any findings will surely be heavily scrutinized, helping to maintain the integrity of the results.

Whatever one’s opinion is on the autism-vaccine controversy, the quest for the truth should be the primary objective and research should not be clouded by biased reports from the media or elsewhere. Additionally, more studies are needed by organizations and researchers that do not have a vested interest in the outcome of the results, whether positive or negative. We owe our children and future generations nothing less.

Fighting the Wrong Autism Battles Can Prove Costly

Igor Stepovik

The US Supreme Court’s decision earlier this week protecting vaccine manufacturers from lawsuits highlights an even larger problem for many children with autism spectrum disorders and their families. 

Well-intended parents are out campaigning and spending precious time, money and resources, all while home therapies needed to treat their child’s autism are being neglected. However meaningful and heartfelt their efforts may be, there’s nothing more important than the personal obligations that a parent owes to their child.

From seeking out private therapists to advocating in the schools and governments, to implementing hours of in-home ABA therapy, there are important things parents can be doing today that will ultimately shape a child’s life tomorrow. They need to be making the proper decisions now so there will be no regrets later on because they did not fight the proper battles.

I urge all parents to understand that no matter how much you may trust people or what titles or degrees they may have, you must do your own homework. The vaccine and autism diet controversies have clearly shown that we are dealing with autism like sheep by following the herds without carefully researching our own children’s individualized priorities and needs.

Parents should not expect any fad or treatment "cure" to replace behavioral therapy responsibilities inside of the home. In the majority of cases, autism can be turned around with this type of intervention. I was a skeptic myself, but have witnessed first-hand how powerful and effective it can be.

My heart aches for the countless families who have spent years of precious time and money filling out statements, paying attorneys (who were all too willing to take money), acquiring depositions, testifying and campaigning for issues that have now been debunked or disproven. 

The possessions, people and world I left behind in order to get help for my son pale in comparison to the miraculous and wonderful life I now live. I am now watching my former speechless, head-banging, wall-staring child sing, dance, spell, read, count, play and smile. This is evidence that a parent and their child are better-served in the home doing the required therapy that has been proven to be effective.

Stay home. Move. Do whatever needs to be done. Realize that whether they are paid or not (regardless of titles or notoriety), anyone interacting or intervening in your child’s life is only brief. You are the eyes your child will look into, the shoulders they will lean on and the hand they will hold years from now. Knowing that you did everything you could today will make that a great place to be in the future.

Learning and teaching through play has become a way of life for me. Home therapy has been like living in a Mary Poppins movie and it is fun. However, I have learned that any changes or distractions from this form of treatment will potentially set a child back.

I too, tried the autism diet (to no avail) but fortunately never jumped on the vaccine bandwagon or spent time suing others. I realized there are so many hours in the day for what I could do for my son. Ultimately, I came to the understanding that as parents of children with autism, we only have a small window of time and we need to use it wisely.

My son was and is perfect to me. I love the world he has made and created for us. I have learned from other parents, with similarly remarkable results.

As parents, all of us love our children immensely and will do whatever it takes to see them improve. However, sometimes our meaningful intentions can become misguided, causing us to lose focus on what is most important. 

The good news is that it is never too late to make the sacrifices to put a child’s best interests first, and giving them our undivided attention now will yield immeasurable results in the future.

James Durbin Cruises to the Top 24 on American Idol

On Thursday evening, American Idol viewers watched as judges Randy Jackson, Jennifer Lopez and Steven Tyler eliminated and advanced contestants, ultimately comprising the show’s coveted "top 24" spots. Included in that group was James Durbin, who along with his fellow contestants, will now be performing on live television beginning next week.

In his final solo performance before moving on, Durbin performed a rendition of  “A Change Is Gonna Come” by Sam Cooke, clearly impressing the judges with a wide range of vocals.

Durbin, who has been diagnosed with both Tourette’s and Asperger’s Syndrome, was visibly nervous prior to learning his fate, with his grimacing and wincing tics clearly noticeable to viewers.

As Durbin celebrated the news of his advancement, Steven Tyler quipped, "Take that sh** Tourrette’s!" and noted that he was "a lightning bolt." All three judges seemed pleased to see him advance and in an indication that Durbin is one of the frontrunners this season, Ryan Seacrest said to viewers, “We now turn James over to you."

James Durbin has been impressive since the audition rounds began but based on some comments on Twitter and elsewhere, it appears he has a few haters as well. Earlier this week, even TMZ tried running a "gotcha" piece on Durbin that involved some unflattering comments he made last year, all while insensitively referring to him as the "Tourrette’s Guy." Clearly, TMZ isn’t well educated on Aspies and their lack of "filters."

As Durbin advances, it’s likely that the insensitivity and cruelness of others will continue to emerge, as is usually the case when someone is different. However, James now has the opportunity to silence his critics and show the world that individuals with autism and other special needs are capable of achieving extraordinary things in their lives, regardless of circumstances.


Awareness of High Functioning Autism Lacking in Schools

The seemingly endless reports of unethical and opportunistic individuals related to autism seem to be occurring on a regular basis and where there’s money to be made, there will always be those who are willing to take advantage of the misfortunes of others.

I myself received a rude entry into the world of autism and because of a scamming therapist, my twin sons lost the opportunity for early intervention. Their diagnoses of Asperger’s Syndrome and high functioning autism didn’t come until they were in the fourth grade. Through my tears of grief, I also felt relieved that they would finally be in an appropriate program with a teacher who knew what she was doing. 

Unfortunately, this wasn’t the case.

After transferring to a school with an inclusion program for autism, the first thing my sons’ new teacher told me was that she didn’t know anything about Asperger’s, but she would Google it when she got home. Their social skills consisted of one period of playing a board game they could never finish by the bell. To make matters worse, the primary function of their classroom aide was to make my kids produce as much work as their neurotypical peers, raining down punishment if they didn’t. 

I found out that special education teachers in my state are not educated in autism, nor are the teachers who host children with autism in their mainstream classes. And, of course, neurotypical classmates have no preparation for having a person on the autism spectrum in their midst.

Today, my boys are in their first year of high school. One is doing okay, but the other is struggling. His school week is punctuated by spectacular meltdowns, leaving him humiliated before his teachers and peers. 

It’s the same story year after year — glazed looks at the mention of best practices for Asperger’s, power struggles with teachers who don’t know what they’re doing and constant efforts on my part to assure that his condition is helped instead of exacerbated. 

A breakthrough may come in the form of a DVD entitled, "Intricate Minds: Understanding Classmates with Asperger’s Syndrome." It is available at elementary, middle and high school levels and designed to help neurotypical kids understand and appreciate their classmates with Asperger’s Syndrome. Peppered with facts about the disorder, most of the video consists of children speaking openly and poignantly about what it is like to have this high functioning form of autism. While their stories are different, the common yearning for acceptance and respect is very clear. 

Although geared for students, this DVD is also an important training tool for all adults who encounter children with Asperger’s and high functioning autism. It can be adapted for families, schools, counselors and health care professionals to help raise greater awareness about their peers who struggle with these disorders.

My suggestion is that "Intricate Minds" become part of the curriculum at my son’s high school – both for his teachers and his classmates. The DVD is now in the principal’s inbox. As a very tenacious advocate, I’m determined to sweep the sensory and emotional land mines from my son’s school environment so he can reclaim his self image as a capable and sociable young man.


 
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