The YAI Network Autism Community

A reader e-mailed us today asking about Google’s Project Spectrum. As far as we can tell, it seems to be an initiative using Google’s SketchUp software in tandem with social networking capabilities as a way to help kids on the spectrum express themselves and share their work with others. We love its focus on abilities and the fact that, unlike most autism-focused products, IT IS FREE. Also, it looks like a really fun program for anyone with an eye for design.

Have any of you used this? We’d love to hear what you think about it–its capabilities, its drawbacks, ease of use, etc. Kids and adults on and off the spectrum are welcome to comment!

Jeff Stimpson

Today’s post is by Jeff Stimpson, author of the books Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism. Hear more from Jeff and his wife, Jill Cornfield, on their fantastic blog, AutismVox, and be sure to check out their podcast.

I’m one of three kids, the youngest. My sister was married and gone by the time I knew what planet I was on. My brother Lee is nine years older than I am, so I had an older brother and Lee the teenager had a practice dummy, especially during his kung-fu period. Lee’s gone gray and a little wrinkly now, and we still punch each other.

My 8-year-old son Ned has an older brother, too: Alex, 10, who has autism. “He’s either going to grow up and be like one of us, or he’ll live with me,” says Ned, “or he’s gonna go to this thing where people take care of him and stuff. I would like to live with him. We’re really close even though he is still a lot different from me. Sometimes I have to act like I’m older. In a way, I am the older brother.”

I always imagined it’d a heartbreaking day when predictions came true and Ned did become the older brother. And I have to admit a tug at the strings when I see that Ned is now as tall as Alex, who eats a diet of mostly hot dogs, chicken nuggets, crunchy stuff, chocolate milk, and yogurt. Oh, and sometimes banana and watermelon. Mostly Alex tries to take the chunks of watermelon and reassemble them into a whole watermelon.

Which is more than Alex does when he takes apart Ned’s latest Lego creation. “The rest of my LIFE!” Ned will screech at such moments, and who can blame him? Alex scatters Ned’s toys, stands on his trumpet case, hogs the TV for “Elmo.”

“He messes with my life,” Ned says, “but he does it on purpose in a way, like he knocks my stuff over. I think I know why. He likes to hear the big bang.”

I doubt Alex will ever vote, drive a car, or live on his own. For the rest of his life indeed – six or seven decades, maybe, a span of time beyond me – the care or the decisions for care of Alex will fall to Ned. (Let’s not even consider Ned’s eventual wife…)

So maybe it was just fear of parental wrath that made Ned run after Alex one morning before we were awake and Alex had left the apartment. Maybe it’s because Alex’s bed is next to the radiator that on cold school mornings I find Ned in Alex’s bed, both deep asleep, sometimes one with his arm around the other’s neck. Maybe it’s just because Ned was bored one day that he took Alex’s hand, gently coaxed him to the couch, and started jumping on him and initiating their own kung-fu period.

“The brother or sister is closer than the parent is,” Ned points out. “The same height, same age, same thoughts, same idea of playing.”

Then one day in a school conference Alex’s teacher told us that Alex had been getting other kids in the classroom to play by putting his head in their lap and letting them put their heads on his lap. “A lot of these kids aren’t social at all,” the teacher added. “Alex is a very social boy. He loves all the other kids.”

Ah, Ned. My big brother looked out for me, too.

Very inspiring–this video always brings a tear to our eyes. Just shows that we all have potential to grow and improve, no matter what our circumstances.

For those of you living in the New York metropolitan area, the YAI/NIPD Network’s annual International Conference is featuring a few day-long workshops devoted exclusively to autism. This is a great opportunity to learn new skills and meet other parents and professionals. The conference is May 4-8 at the Crowne Plaza, just north of Times Square.

Highlights

• Of special note: The renowned Dr. Brenda Smith Myles will be conducting this year’s full-day post-conference workshop on Friday, May 8. This interactive event is for both parents and professionals who want to learn about “Comprehensive Autism Planning System for Individuals with ASD Across the Lifespan”
• Eustacia Cutler (who is Temple Grandin’s mom!) will be presenting the opening keynote on Monday, May 4.
• The Premier HealthCare Training Institute will present a full-day session, “Trends in Autism: Innovations from Research to Clinical Practice” on Wednesday, May 6.
• Dr. Mark L. Sundberg will conduct a full-day workshop on “Using Behavior Analysis as teh Foundation for Language Asessment and Intervention” on Thursday, May 7.

There are also many individual sessions  on autism throughout the week. I encourage all of you to visit the Web site or download the brochure (PDF) for more information!

Greetings to all and here’s hoping you and yours have a particularly “aware” April 2.  I have seen many items in today’s news regarding autism, most of it fairly negative. Let’s hope that next year, the media will realize that “awareness” can comprise the positive, the negative and even value-neutral information–though maybe that doesn’t sell.

I’d be interested in hearing from any of you who have found any particularly positive, informative or really great autism stories in the news today. Comments open…

By Dr. Charles Cartwright

On Monday and Tuesday, I wrote about Justin, a young man with autism whose parents identified his interest in art at an early age. I’ve included two of his pieces in this post, which the gracious permission of him and his family.

"Self Portrait" Charcoal on paper by Justin Canha

Justin’s story raises many issues that are relevant to all people on the autism spectrum. When repetitive, stereotypic behaviors appear, they tend to be viewed as “stim” behaviors that can interfere with the child’s ability to respond to intervention programs. In addition, cognitive ability is difficult to evaluate because of the impact of the social, language and behavioral manifestations of autism. The results of formal testing procedures are difficult to interpret because of these factors.

However, a child’s ability, skill, and talent may initially present in the form of these repetitive behaviors. One of the core aspects of autism is a restriction in the range of preferred activities and the engagement in repetitive behaviors, with the presence of routines and rituals. Parents describe how, from the time of early development, their children show repetitive motor mannerisms and engage in repetitive activities, such as spinning objects or lining up toys. In addition, children with autism spectrum disorders often develop intense circumscribed interests that may involve repeatedly drawing certain objects. In many cases, parents recognize that these circumscribed skills or interests actually reflect their child’s intelligence. They often assert this perception despite being told by professionals that formal cognitive testing procedures have shown that their child is functioning at a low cognitive level.

Individuals with autism have a strong tendency to focus on detail. In contrast, they often have difficulty in developing a sense of the whole picture, or the gestalt. The theory that defines this style of viewing the world is referred to as “weak central coherence.” This implies a cognitive deficiency and underplays the presence of cognitive strengths. It is concerning that cognitive assessments report mental retardation in up to 70 percent of people on the autism spectrum. In a study by Dawson et al. (2007), intellectual assessments using the Ravens Progressive Matrices (Mackintosh, 1998) and the Wechsler Intelligence Scale for Children (Wechsler, 1991) were administered to children with autism and compared to typically developing children. The scores of the Ravens in the children with autism were 30-70 percentile points higher than their Wechsler scores. In contrast, the typically developing children showed no discrepancy in the two sets of scores. This finding supports the concept of atypical cognitive processing in these children, rather than mental retardation.

"Mother and Baby in Bath" charcoal on paper by Justin Canha

“The Intense World Syndrome,” as described by Makram et al. (2007), hypothesizes that individuals with autism spectrum disorders have excessive, rather than diminished, cognitive functioning. The authors describe the phenomena of “hyper-perception, hyper-attention and hyper-memory” that may manifest clinically, for example, as acute sensitivity to noise, excessive focus on detail and impressive ability to memorize certain details. The theory proposes that individuals with autism have very intense perception of fragments of the sensory world with very clear and persistent attention to the detail. The theory proposes that there is an excess of neuronal information processing and storage in local microcircuits of the brain. They conclude that that these circuits are hyper-reactive and extremely plastic, driving the development of new learning, the formation of intense memories and often exceptional skill for a particular task. The negative consequence of this form of cognitive style is the marked restriction of behavioral responses to stimuli in the environment.

How is this all relevant to the development of Justin’s artistic ability? His desire to draw was first evident in early childhood, at a time when his ability to communicate was hampered by his language delay. His cognitive ability at that time was very difficult to assess and his repetitive stereotypic drawing could easily have been seen as interfering with his development and the acquisition of important social and language skills. However, given the encouragement and reinforcement of those around him and the opportunity to develop his drawing skill, he responded by rapidly expanding his skill, showing a keen eye for visual details and an ability to focus for sustained periods of time. He was drawn to novel subject matter and media, thus expanding his knowledge of how to draw and developing his artistic skills. Justin’s pattern of learning and his response to environmental stimulation, appear to reflect this exaggerated brain plasticity, as hypothesized.

Maria Teresa and Briant hope that Justin will someday live independently in their hometown of Montclair, NJ, a community that now knows him well and admires his work. They hope that Justin’s talent will continue to allow him to grow as a person, and foster his future social life, friendships and happiness. This is the wish of all parents whose children are faced with the challenges of a life with autism.

By Dr. Charles Cartwright

Yesterday, I began to share the story of Justin, a young artist with autism, whom I’ve known all his life. This was in response to exciting new findings by the Yale Child Study Center.

In WebMD’s coverage of the work, Ami Klin, Ph.D., is quoted as saying:

“I have 20 years serving children with autism and their families, and their well-being is all that matters…There is nothing in our research that in any way conveys a sense that children [with autism] are any less human, any less deserving of our love and respect, or any less of anything at all. It is that the way they seem to learn about this world is rather different than the strategies used by their peers. By better understanding how they do this, the better we will be able to reach them, and like in any personal relationship, the better they will be able to reach us. … Their different perspective might give us solutions that others, with the typical mind and brain, might never see.”

For Justin, art has been the strategy that he has used throughout his life to learn about his world and relate to others.

When Justin was 8, he was introduced to a therapist in Florida who realized that art was an essential medium that could be used for teaching, therapy and discussion. “Where words and language were not coming to help Justin express his thoughts, he could express himself to others through drawing,” says Maria Teresa.

Later at age 10, Denise Melucci, an art teacher Justin’s parents came across, helped expand Justin’s art beyond repetitively drawing characters with markers, developing his skills and his focus. “We wanted to see Justin challenged beyond his comfort zone and after we established the goal of expanding his repertoire, Justin began using charcoals, pastels and water colors, and experimenting with different subject matter,” says his mother.

With the help of Denise, Justin’s parents organized a small art show to display Justin’s work—and from there, Justin has never looked back. Soon after the art show, family members began asking Justin to draw portraits of their pets. He was so skilled at drawing animals that Maria Teresa arranged for a display of his drawings at a pet store, where his work was met with rave reviews. Once his family moved to New Jersey, Justin became involved with Arts Unbound, an organization that markets the work of non-traditional artists. His talent was recognized by  the Ricco/Maresca Gallery in 2005 and since then his artwork has been featured in many exhibits, some of which include works of renowned artists without disabilities. Justin slowly came to realize that others recognize and appreciate his work. Now, at age 19, Justin carries a sketchbook full of drawings as a way of initiating social interactions with people he meets.

Justin’s talent has provided him with a tool to navigate an otherwise confusing and difficult everyday life with autism. It is also his vocation, enabling him to earn money and have the potential to become increasingly self-sufficient.

Stay tuned for the wrap up — including a touch of science — of Justin’s story, coming tomorrow!

By Dr. Charles Cartwright

Yesterday, WebMD reported that Ami Klin, Ph.D. and Warren Jones, Ph.D. at the Yale Child Study Center have made a surprise discovery regarding the sensory perception differences between people with autism and others. Their research could lead to earlier detection and intervention, which could make a huge difference in the lives of kids with autism and their families. You can read the full article here.

The findings at the Yale Child Study Center support my belief that identifying the interests and abilities of children with autism as early as possible will help them in every aspect of their lives. This is distinct from the deficit model of autism, which looks primarily on what the individual can’t do.

Justin, who I’ve known since he was a small boy, is a great example of what can happen when abilities are identified and encouraged. He was just 5 when he picked up his first set of markers and began drawing Disney characters. His parents, Maria Teresa and Briant, would watch as he drew a single figure—from the Lion King or Winnie the Pooh—over and over again until another movie, show or character captured his interest.

“His drawings never included real people and were done simply out of enjoyment,” says Maria Teresa. “Justin was always quite oblivious to his talent and abilities for drawing.”

A few years before Justin began drawing, his parents learned that he had autism. He had little eye to eye contact, social interest and use of social gestures, as well as atypical social-emotional responses. His language development was significantly delayed, he demonstrated stereotypic motor movements and he had a marked restriction in his range of interests.

Throughout his life, Justin’s art has been a true motivator for learning, communicating and feeling successful—essential experiences for all children. But his parents are quick to point out that they do not believe that Justin is a savant. Rather, he is a person with autism who is fortunate to have parents who identified a genuine interest and ability early in his life, and who have consistently provided opportunities for him to practice and develop his skill. For Justin, that has made all the difference.

Stay tuned for Part II of Justin’s story, coming tomorrow!

We look forward to joining the thriving online autism community and hearing from people with autism, their families and professionals from all over the world.

For services, tips from experts and other great information, be sure to check out the YAI Autism Center!