Much attention has been given to the accomplishments of individuals on the high-functioning end of the autism spectrum.
We hear of gifted savants such as Daniel Tammet or Kim Peek who defy imagination
with uncanny visual, mathematical or historical recollections and abilities.
However, in a category all his own is Tito Mukhopadhyay, a native of India who has been described as “the Rosetta
stone of autism." Despite being non-verbal and in need of constant care, Tito is able to describe and illustrate thoughts about the world he lives in with incredible detail and insightfulness.
Normal brain functioning is described as the combination of numerous processes and systems seamlessly working together. While neurotypical
individuals process sights and sounds immediately, current research indicates that this information is processed at different speeds in our brains, but so rapidly that they seem simultaneous to us.
Mukhopadhyay has described his world as a kaleidoscopic, where he is forced to select a single sense at a time in order to keep
a flood of visual and auditory senses at bay. These descriptions confirm recent theories
about autism and are helping scientists grasp the inner workings of the autistic brain.
Tito’s ability to share his amazing insight is in part due to the tenacious efforts of his mother,
Soma, who was undaunted by his heartbreaking diagnosis at the age of three and insisted upon teaching him to read and write. Untrained in autism, she dedicated herself to reaching her
son and single-handedly developed the Rapid Prompting Method for Autism, a
communication technique that she is generously sharing with others ( http://www.halo-soma.org
).
Simply put, she trained her son to focus, point and spell using an omnipresent writing
pad and later on through a keyboard. Tito has now evolved into a prolific and gifted author and poet, shocking the world with beautiful stories and poems he began writing between the ages of eight and eleven.
Now in his early twenties, Tito Mukhopadhyay has already written a book entitled “How Can I Talk If My Lips Don’t Move? Inside My Autistic Mind,” an unparalleled look into the heart and mind of a tortured, yet joyous soul. In it, Tito describes how his mind works and the ways he views the world and its neurotypical inhabitants. He also shares his unique perception of speaking stories to a mirror and then having the mirror speak the stories back to him as if it was an entity separate from himself and non simultaneous with his own speech.
Tito once wrote, “With the help of my imagination, I can go to places that do not exist and they are like beautiful
dreams. But it is a world full of improbability racing toward uncertainty.”
The improbable accomplishments of this remarkable young man bring hope to the uncertainty of living with
low-functioning autism. Everyone on the autism spectrum and their loved ones can take heart from this
soulful and accomplished young man.
We recently received a comment by someone who noticed the excessive coverage of
American Idol’s James
Durbin on our site. My response was that we have not covered him nearly enough.
James Durbin is currently shattering many misconceptions and stereotypes about what
individuals with
special needs are capable of and is raising a tremendous
amount of awareness for both Asperger’s and Tourette’s. The positive feedback we have received about Durbin has been nothing short of
remarkable and he has been responsible for giving hope to many affected by autism and other related disorders. As a result, I feel it’s necessary to
continue reporting on James as much as possible so people will continue to learn
about his story and discover just how far he’s come to get where he is.
A few days ago at an American Idol Top 13 party in Los Angeles, James was
interviewed by HollywodLife.com and opened up about his family, personal
life and even addressed the many comparisons being made to Season 8 American Idol
runner-up, Adam Lambert. The interview, which can be seen below, is fascinating for several reasons.
First of all, it is one of the first times we have seen James in an
unscripted, unedited environment. His facial tics are overwhelmingly
noticeable and while watching the interview, I couldn’t help to think about the horrible
teasing he must have endured while growing up. In fact, a reader posted the following to our site yesterday:
I am from Santa Cruz, California. I know several people who know James, or who have kids who went to school with James. As the story goes, James was bullied horribly for his afflictions. I am not sure if he is on medication or what his deal is. But I know that the tourettes
(sic) and Aspergers (sic) (which was not even named until 1994) were very visable
(sic) in James while he was in school. I have heard stories from too many people.
I wish James well.
And despite his talent and accomplishments, James has received some harsh
criticism online, mostly because people think he’s not "autistic
enough" and others who are die-hard Adam Lambert fans who claim that he’s
only a knock-off version, with a narrower vocal range.
In his interview, Durbin addresses these comparisons and also mentions that he
had auditioned for American Idol several years ago and did not make the cut.
With all of the obstacles and challenges James has overcome over the years, his
accomplishments so far have been truly inspiring. Additionally, judging from the
interview, James appears to be a very genuine and grounded individual and it’s
highly likely that as he continues to advance in the competition, his fan base
will only continue to grow, increasing his chances to become the next American
Idol.
A few weeks ago, many in the autism community observed "Autism
Sunday," also known as the International Day of Prayer for Autism and Asperger Syndrome.
The annual event, which takes place during the second week of February,
encourages people from all denominations across the globe to pray for those
affected by autism spectrum disorders. The response to this year’s event was
extremely heartening, knowing that so many other people were committed to
praying about something that is responsible for affecting over 67 million people.
As a person of devout faith, one of the most difficult things I’ve had to
deal with during my Christian walk was learning of my son’s autism. When he was
first diagnosed at the age of three, some of the many questions I posed to
myself included why me?, am I being punished? and how could this have happened?
Since that time and after many highs and lows, I’ve not only been given the answers, but I’ve also been able to encourage others who posed these difficult
questions themselves.
Let me begin by saying that I believe God is omniscient, omnipresent, omnipotent and the Creator
of all things. He does not make mistakes, never needs a plan B and will never be
caught off-guard. As such, I am comforted in knowing that my son’s autism did
not happen by accident nor did it take God by surprise.
When we first received his diagnosis, I remember initially feeling angry at God and my faith was tested in
a major way. After all, it took me over two years to get pregnant and I felt as if my child was a direct answer to prayer.
The questioning and doubting that ensued is something that most parents struggle
with at some point in time during their autism journeys. For those who do not
share the same beliefs as me, the questions may come in different forms, but I think at some point, we all ask why we’ve been dealt such a difficult lot in
life.
I did not choose autism — it chose me. It came and kicked in our door as an unwelcome
guest. With that in mind, I know that God has entrusted me with my child’s autism, knowing it was something I and my family could bear. Not only has this been proven
correct, but we have been able to witness and experience many miracles, joys and
triumphs in the past six years. Our child is a gift and I would not change a hair
on his head. His uniqueness, talents and personality were all created the way
God intended.
As a believer, perhaps the best answer to the question of "why me" can
be found in the ninth chapter of the book of John.
When encountering a man who was blind from birth, Jesus’ disciples asked him,
“Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus
said, “Neither this man nor his parents sinned, but this happened so that the
works of God might be displayed in him."
Whenever my family faces challenges associated with my son’s condition, we are
encouraged by knowing that despite our struggles, he is being used by God
to impact other people’s lives and glorify Him in the process.
Additionally, my son’s condition is not a "curse," nor is it an affliction, but rather a gift that is being used to enrich and bless those around him, beginning with me.
There is an amazing autism documentary on the horizon that will be released
just in time for Autism Awareness Month in April. Directed by Gerardine Wurzburg, “Wretches & Jabberers” follows two grown men with autism as they embark on a world quest to change attitudes
and perceptions about their disorder. Tracy Thresher, 42, and Larry Bissonnette, 52, travel to Sri Lanka, Japan and
Finland, deliberately challenging people’s attitudes and assumptions about their
intelligence and capabilities.
Thresher and Bissonnette were both presumed “retarded” as children and excluded from normal schooling. Because of their limited speech, they each faced lives of social isolation and despair in institutions. When as adults they learned to communicate by keyboarding, their lives improved dramatically. The message of their world tour is the life-altering power of communication that ushers in hope for everyone on the autism spectrum.
The film records their emotional and transformative encounters with young men and women with autism, parents and students, as well as their delightful reactions to the local sights and sounds of the cultures they are encountering for the first time.
Wurzburg, who won an Oscar in 1993 for "Educating Peter," a
documentary short about Down syndrome, appears to have outdone herself as there
has already been significant buzz generated about this film. Additionally,
Wurzburg is no stranger to the subject of autism, directing and producing the
2004 documentary short, "Autism is a World."
"Wretches & Jabberrers" opens for a one-week run in New York City on April 1 at the AMC Empire 25. After that, it will be sent on a forty city tour
in top markets, including Los Angeles,
Houston and Chicago. The Autism Society of America will receive an undisclosed portion of ticket sales and help promote the film.
It’s rare for any documentary to receive a multiplex showing, but AMC Theatres
has long been on the forefront of accommodating moviegoers with autism. In sixty-two cities, they host a program where Hollywood films are screened
in theatres that cater to those with autism. Auditorium lights are brighter and the volume is lower as guests are encouraged to move about,
sing or shout in reaction to the movie.
Hats off to AMC for giving “Wretches & Jabberers” the theatrical run it
deserves and for their commitment to the autism and special needs communities.
Based on the trailer, it looks to be a very powerful film.
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.
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.
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.
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.
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.
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/ .
